National Disgrace: Millions of Americans with Serious Brain Disorders Go Untreated by Jonathan Stanley, JD
An estimated 4.5 million Americans today suffer from the severest forms of brain disorders, schizophrenia and manic-depressive illness (2.2 million people suffer from schizophrenia and 2.3 million suffer from bipolar disorder). According to the National Advisory Mental Health Council, an estimated 40 percent of these individuals, or 1.8 million people, are not receiving treatment on any given day, resulting in homelessness, incarceration, and violence. The reasons for this are many, including economic factors, the failure of deinstitutionalization, civil liberty issues as well as the effects of the illnesses themselves.
Economic factors and the failure of deinstitutionalization are the two leading causes of today’s crisis situation. A greedy game of musical chairs, or cost shifting by state and local governments to the federal government, especially to Medicaid, has played a pivotal role. As a result, individuals with serious brain disorders have been dumped out of psychiatric hospitals and shoved into nursing homes and general hospitals (many of which offer worse care than the psychiatric hospitals from which they were discharged), and forced onto the streets and into jails.
Since its beginnings in 1955, deinstitutionalization has been more about political correctness than scientific knowledge. When deinstitutionalization began there had been no scientifically sound studies conducted on how to best reintroduce individuals with the severest brain diseases back in to the community. In addition, there have been very few services available to these individuals when they are released into the community.
Battles in the nation’s courtrooms over individual civil rights also have helped to further jeopardize America’s most vulnerable citizens. Civil liberty advocates have changed state laws to such an extent that it is now virtually impossible to assist in the treatment of psychotic individuals unless they first pose extreme and imminent danger to themselves or society.
Adding to this crisis are the illnesses themselves. Schizophrenia and manic-depressive illness greatly impair self-awareness for many people so they do not realize they are sick and in need of treatment. Unfortunately, today’s state mental health systems and treatment laws – that oversee the care and treatment these individuals receive – play right into the vulnerability of these devastating diseases with the effect that far too many people remain imprisoned by their illness.
Federal Dollars Fuel Disjointed, Uncoordinated Care
Prior to the 1960s, when federal funds for psychiatric care became available, the public psychiatric care system was almost completely run by the states, often in partnership with local counties or cities. Since then, the public psychiatric care system has become a hodgepodge of categorical programs funded by myriad federal, state, and local sources. The primary question that drives the system is not “what does the patient need?” but rather “what will federal programs pay for?”
- Deinstitutionalization: A Rocky Road To Nowhere
Deinstitutionalization, the name given to the policy of moving people with serious brain disorders out of large state institutions and then permanently closing part or all of those institutions, has been a major contributing factor to increased homelessness, incarceration and acts of violence.
Beginning in 1955 with the widespread introduction of the first, effective antipsychotic medication chlorpromazine, or Thorazine, the stage was set for moving patients out of hospital settings. The pace of deinstitutionalization accelerated significantly following the enactment of Medicaid and Medicare a decade later. While in state hospitals, patients were the fiscal responsibility of the states, but by discharging them, the states effectively shifted the majority of that responsibility to the federal government.
In 1965, the federal government specifically excluded Medicaid payments for patients in state psychiatric hospitals and other “institutions for the treatment of mental diseases,” or IMDs, to accomplish two goals: 1) to foster deinstitutionalization; and 2) to shift the costs back to the states which were viewed by the federal government as traditionally responsible for such care. States proceeded to transfer massive numbers of patients from state hospitals to nursing homes and the community where Medicaid reimbursement was available. (Note: IMDs were defined by the federal government as “institutions or residences in which more than 16 individuals reside, at least half of who have a primary psychiatric diagnosis.”)
- Since 1960, more than 90 percent of state psychiatric hospital beds have been eliminated. In 1955, there were 559,000 individuals with serious brain disorders in state psychiatric hospitals. Today, there are less than 70,000. Based on the nation’s population increase between 1955 and 1996 from 166 million to 265 million, if there were the same number of patients per capita in the hospitals today as there were in 1955, their total number today would be 893,000.
- The pace of psychiatric hospital closures has accelerated. In the 1990’s, 44 state psychiatric hospitals closed their doors, more closings than in the previous two decades combined. Nearly half of state psychiatric hospital beds closed between 1990 and 2000.
Because of incentives created by federal programs, hundreds of thousands of patients who technically have been deinstitutionalized have in reality been transinstitutionalized to nursing homes and other similar institutions where federal funds pay most of the costs. These alternative institutions, however, lack the full range of services needed to adequately care for persons with severe brain disorders.
Psychiatric Patients Dumped into Nursing Homes and General Hospitals
As state psychiatric hospitals improved in quality in the 1970s and 1980s, it became increasingly common to discharge patients from relatively good hospitals with active rehabilitation programs and transinstitutionalize them to nursing homes, general hospitals or similar institutions with markedly inferior psychiatric care and no rehabilitation at all. States save state funds, but transinstitutionalized patients pay a substantial price for the substandard care.
- By the mid-1980s 23 percent of nursing home residents, or 348,313 out of 1,491,400 residents, had a mental disorder.
- Costs in general hospitals are often $200 per day or more than the costs in public psychiatric hospitals. These additional costs are of little consequence to the states since federal Medicaid dollars are paying the majority of the bill; the states’ costs are lower and that is the limit of their concern. Unfortunately, evidence shows that general hospitals admit psychiatric patients with less severe illnesses, but turn away those who are more seriously ill. Inpatient stays for people with serious brain disorders are typically shorter in general hospitals, which compromises the person’s ability to stabilize on medication.
- Jails and Shelters Serve as Surrogate Hospitals
The woeful failure to provide appropriate treatment and ongoing follow-up care for patients discharged from hospitals has sent many individuals with the severest forms of brain disease spinning through an endless revolving door of hospital admissions and readmissions, jails, and public shelters.
At any given time there are more individuals with schizophrenia who are homeless and living on the streets or incarcerated in jails and prisons than there are in hospitals:
- Approximately 200,000 individuals with schizophrenia or manic-depressive illness are homeless, constituting one-third of the estimated 600,000 homeless population. Many eat from garbage cans and are victimized regularly.
- Nearly 300,000 individuals with schizophrenia or manic-depressive illness, or 16 percent of the total inmate population, are in jails and prisons, primarily charged with misdemeanors, but some charged with felonies, that were caused by their psychotic thinking.
- Less than 70,000 individuals with schizophrenia or manic-depressive illness are in state psychiatric hospitals receiving treatment for their disease.
Violence Real Issue for Untreated Severe Brain Disorders
Violent episodes by individuals with untreated schizophrenia and manic-depressive illness have risen dramatically, now accounting for at least 1,000 homicides out of 20,000 total murders committed annually in the United States. According to a 1994 Department of Justice, Bureau of Justice Statistics Special Report, “Murder in Families,” 4.3 percent of homicide committed in 1988 were by people with a history of untreated mental illness (study based on 20,860 murders nationwide.) An NIMH report indicated that severe and persistent mental illness is a factor in 9%-15% of violent acts. Recent studies have confirmed that the association between violence and untreated brain disorders continues to be widespread:
- A 1990 study of families with a seriously ill family member reported that 11 percent of the ill individuals had physically assaulted another person in the previous year.
- In 1992, sociologist Henry Steadman studied individuals discharged from psychiatric hospitals. He found that 27 percent of released patients reported at least one violent act within four months of discharge.
- Another 1992 study, by Bruce Link of Columbia University School of Public Health, reported that seriously ill individuals living in the community were three times as likely to use weapons or to “hurt someone badly” as the general population.
- A 1998 MacArthur Foundation study found that people with serious brain disorders committed twice as many acts of violence in the period immediately prior to their hospitalization, when they were not taking medication, compared with the post-hospitalization period when most of them were receiving assisted treatment. (The study showed a 50 percent reduction in rate of violence among those treated for their illness. Roughly 15.8 percent of individuals with a severe brain disorder committed an act of violence prior to hospitalized treatment, compared with only 7.9 percent of these same individuals post-treatment.)
- There are three primary predictors of violence, including:
- History of past violence, whether or not a person has a serious brain disorder;
- Drug and alcohol abuse, whether or not a person has a serious brain disorder; and
- Serious brain disorder combined with a failure to take medication.*
- Other indicators of potential violence include:
- Neurological impairment;
- Type of delusions (i.e., paranoid delusions – feeling that others are out to harm the individual and a feeling that their mind is dominated by forces beyond their control or that thoughts are being put in their head); and
- Type of hallucinations (i.e., command hallucinations).
(*Note: While failure to take medication is one of the top three predictors of violence, civil rights lawyers have continuously expanded the rights of those with a lack of insight into their illness to refuse to take medication. Past history of violence is another major predictor of violent behavior, yet in many states these same civil rights attorneys have restricted testimony regarding past episodes of violence in determining the present need for hospitalization and assisted treatment.)
(Reprinted with Permission by Jonathan Stanley, JD, Assistant Director of the Treatment Advocacy Center).
For further info from the Treatment Advocacy Center, please click on these links.
Violence & Schizophrenia
The issue of our publication The Catalyst with tips for family members