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Counting The Mentally Ill: The Needs Haven't Changed, Only The Definitions

Mark Dombeck, Ph.D.

If you have been monitoring the mental health related news generated by the wire services and newspapers of this great land, you will not be surprised to learn that the funding outlook for public 'community based' mental health services is looking poorer all the time. Less money for community mental health means that less care is available for people with mental health and substance abuse disorders who are not fortunate enough to have adequate health insurance or rich enough to pay cash for treatment. It is increasingly easy for persons who might benefit from community based care to fall through the ever-widening cracks to the point where they are homeless and without resources that might help them maintain themselves. Not too surprisingly I guess, more of the moderately to severely mentally ill and substance abusing population have found their way into the prison system where, I understand, they also typically do not receive adequate mental health care. It is a crisis that has been building for a long time.

I've never been entirely sure how decisions to cut public health care budgets get made. I'm certain that it is a pretty political business. As in most politics, power (and funding) generally flow towards the already powerful. The marginalized and stigmatized population of moderately to severely mentally ill and substance abusing folks out there, though large in numbers, are not generally well enough organized or well funded to make much of an impact on those in power. Despite the few groups lobbying for compassionate care for mental illness, there are many other powerful groups chasing down other (sometimes worthy, sometimes not) funding agendas. It is all too easy for well-healed politicians to ignore the mentally ill.

No decision makers ever want to be labeled as heartless or cruel or lacking in compassion. It seems fairly important, then, that when an important service such as public mental health gets cut that those making the cuts are able to rationalize their decisions to make such cuts. I'm all too afraid that a recent study published in the February, 2002 Archives of General Psychiatry will provide further ammunition and rationalization for those wanting reasons to justify further mental health care cuts.

The article, entitled, "Revised Prevalence Estimates of Mental Disorders in the United States: Using a Clinical Significance Criterion to Reconcile 2 Surveys' Estimates" by Narrow, Rae, Robins & Regier basically argues that previous estimates of the number of mentally ill people in the United States at any given time (30%) have been too high. The best estimates available of the number of mentally ill in America have been taken from two large studies, the National Institute of Mental Health Epidemiologic Catchment Area Program (ECA; 1980-85) and the National Comorbidity Survey (NCS; 1990-92). The results of these two studies suggested that in any given year up to 30% of Americans complain of mental health disorder symptoms, and that up to 50% of Americans would experience mental health symptoms at some point in their lives. If these numbers can be believed (and there is little reason to suggest that they should not be believed) the mental health care system in America has been woefully under funded and unable to meet the needs of the population for some time. That these numbers have been known for over a decade while the amount of funds available to mental health has continued to decline suggests something else - that inconvenient facts often get ignored or rationalized away.

The good doctors responsible for the article I'm commenting on don't actually suggest that the two large studies that form the basis for the 30% and 50% mental illness symptom figures are faulty or came to wrong conclusions. Rather, they argue that symptoms of mental illness do not mental illness make - that in many cases those people who were complaining of symptoms of mental illness did not actually have a 'clinically significant' problem. What this means is that although those many Americans responding yes to symptom questions may have been suffering to one degree or another, many of them were probably not suffering enough to warrant a diagnosis and treatment. Their careful reanalysis of results from the two studies suggest that only 18.5% of adults (and not 30%) really deserve to be counted as having a mental disorder requiring treatment during a given one year period.

The term used here, 'Clinical Significance' cannot be understood outside of the technical process of making a diagnosis. All mental health diagnoses are made according to criteria (checklists of symptoms) that are defined in a book known as the DSM (the Diagnostic And Statistical Manual Of Mental Disorders, currently in its 4th - text revised edition). A given disorder might have seven symptoms that can be associated with it. According to the rules, the disorder can be diagnosed only if five or more of those symptoms are met. Someone who reports having five symptoms gets a diagnosis, while someone who reports only four symptoms doesn't get the diagnosis. Although the DSM is the best widely accepted attempt so far in existence to help different doctors agree on diagnosis, there remains never-the-less a sort of arbitrary line that it draws, beyond which someone has a condition, and before which someone does not.

The DSM offers only an approximation of the reality of clinical conditions. In reality, people who have symptoms are suffering, some more than others and some less. The reality of suffering is that it exists on a spectrum with a lot of 'gray' area between the extreme points. Out of practical necessity, DSM diagnostic procedures reduce that gray area to a simple black and white decision; a person is either diagnosed with a clinically significant disorder, or she is not. But there is a very important point that must not be lost! - Many people who are short a symptom and whose symptoms are not quite clinically significant are still actually suffering and probably can benefit from treatment. The lowering of the estimate of mentally ill Americans from 30% to 18.5% in any given year does not mean that 11.5% of Americans spontaneously got better - rather they are still out there and still suffering. What this does mean is that the definition of someone who is 'really suffering and in need of treatment' has been made more stringent, and consequently fewer people qualify as 'really suffering' under the new definition. What has happened here is no different than if the government decreased the amount of yearly income necessary for someone to be defined legally as "above the poverty line". Someone who is earning a low wage is still poor, even if the government's revised definition says differently.

Scientists are great sticklers for precision and accuracy and technical definition but they are often blind as bats to the social impact of their work. And the social impact of this work is, I fear, that these scientists will create the impression that there are actually fewer suffering mentally ill people out there than we thought. Their work stands on the subtle, purely technical and even arbitrary (if consensus-defined) definition of the meaning of 'clinical significance' for diagnosis. This subtle meaning will most likely be lost as this article translates to public awareness.

While I have no idea whether the scenario I've outlined above will come to pass, I do know that insuring that an adequate public mental health care infrastructure is available to Americans in need is low on the priorities list of most politicians. Given the post 9-11 atmosphere of increased anxiety, stress and paranoia this is a crime. If there is a take-home message in this essay it is probably this: Be vigilant with regard to how the money flows with regard to funding mental health and to the ways that our elected officials rationalize and justify their funding decisions. If you don't like how funding decisions for mental health are shaping up in your city, state, or at the federal level you can do something about it. Write to your representatives and express your opinions. Legislative advocacy information can be found at both the Mental Health America formerly National Mental Health Association (NMHA), and National Alliance for the Mentally Ill (NAMI) websites. A list of your governmental representatives at the state and local levels can be found at the AOL Government Guide website.

Thanks for listening.

Mark Dombeck, Ph.D.