Schizophrenia and manic-depressive illness are overwhelming diseases that affect 4.5 million Americans combined. On any given day, only 1.8 million people challenged by these cognitive diseases are receiving treatment. These numbers should cause more people to examine why so few are actually receiving medical treatment for their illnesses.

The question of why this population is neglected is complex, but it may be simplified into two core issues: lack of availability and lack of accessibility to mental health services.

The Treatment Advocacy Center (Center), a non-profit organization in Arlington, Virginia, was established in 1998 to eliminate legal and clinical barriers to timely and humane treatment for Americans with severe brain disorders who are not receiving appropriate medical care. Focusing on schizophrenia and manic-depressive illness (bipolar disorder), the Center works to prevent the devastating consequences of non-treatment: homelessness, suicide, victimization, worsening of symptoms, violence, and incarceration.

Since 1960 more than 90 percent of state psychiatric hospital beds have been eliminated. The reduction in state psychiatric care facilities (deinstitutionalization) greatly reduced the availability of mental health services. The introduction of effective medication for treatment of serious mental illnesses during the mid-1950's precipitated the onset of psychiatric state hospital closures. However, it would be the enactment of Medicaid in 1965 that played a more significant role in the reduction of state facilities.

The IMD Exclusion
By closing their psychiatric hospitals, states could shift the burden of fiscal responsibility to the federal government. The federal government prompted this response by adding a provision to the Medicaid law that excluded payment of services for patients in state psychiatric hospitals or other "institutions for mental diseases." This provision is commonly referred to as the "IMD exclusion."

The federal government's exclusion of IMD's left states with little financial incentive to treat consumers of mental health services in state psychiatric facilities. States continued to shift the cost of psychiatric care back to the federal government by transferring patients to nursing homes and general hospitals or out into the community where Medicaid reimbursement was available. Thus, "federal dollars have created transinstitutionalization". ¹

Treatment Barriers
With the focus on avoiding overt costs, the true financial impact associated with a failure to treat chronic and severe mental illness has not been fully realized. States access federal funds by transferring patients from state units to general hospital units, where the treatment costs are more expensive. In fact, "costs in general hospitals are often $200 per day or more higher than the costs in public psychiatric hospitals." ²

Cost shifting and cost avoidance has also led to greater numbers of people with schizophrenia and bipolar disorder in our jails and prisons - with a resulting higher cost to the states. A 1996 Department of Justice source book on criminal justice statistics estimated the annual cost of people incarcerated with these illnesses to be $14 billion. The number does not take into account the additional expenses associated with incarcerating an individual, such as police costs, court costs, social work services, ambulances and emergency room visits. It would be more financially prudent for the states to actually provide the right amount and type of mental health services for the seriously mentally ill.

The closing of state hospitals alone would not have been as costly to the federal government and states and to the well being of consumers if the promise of providing sufficient outpatient mental health services had been kept. Without these services in place, people who cannot access treatment end up homeless, incarcerated or dead. Approximately 16 percent of jail and prison inmates have severe mental illnesses, compared with 2 to 3 percent in the general population. This percentage is five times that of people being treated in state psychiatric hospitals on any given day.

Accessibility to treatment, though important to everyone directly affected by these illnesses, is of critical importance to approximately half of this population who, as a result of their illness, have impaired awareness of their illness. People with impaired judgement face more barriers to treatment because they are less likely to seek services voluntarily. This is most problematic in the nine states where outpatient commitment laws are non-existent, and it is troublesome in the states where these laws are antiquated. An additional barrier to accessing treatment for people with impaired insight are state laws that require an individual to be an imminent danger to self or others before he or she can involuntarily receive care. Allowing the illness to deteriorate to a point of danger puts this group more at risk for suicide, violence, and victimization.

Of the people with schizophrenia or manic depression, 10 to 15 percent attempt suicide. Studies examining suicide among this population associated the higher risk with lack of treatment or reduction in quality care. Although people who are taking their medication are no more violent than the rest of the population, the link between violence, mental illness and treatment non-compliance is well documented. A July 2000 NIMH report indicated that serious and persistent mental illness is a factor in 10 to 15 percent of violence, including homicide.

Achievable Solutions
Though many barriers exist, affordable and achievable solutions are available. Assisted outpatient treatment, when utilized correctly, promotes availability and accessibility for those that are most at risk. Perhaps the single most important reform needed to prevent repeated institutionalization and the consequences of non-treatment is the use of assisted outpatient treatment, which fosters treatment compliance in the community through a court-ordered treatment plan. Not only does the court commit the patient to the treatment system, but it also commits the treatment system to the patient. In the most comprehensive study to date, long-term assisted outpatient treatment was shown to reduce hospital admissions by 57 percent. ³ The results were even more dramatic for individuals with schizophrenia and other psychotic disorders, whose hospital admissions were reduced by 72 percent. While it has not yet been studied, it is likely that similar reductions in jail admissions could also be affected by assisted outpatient treatment. The same study showed that long-term assisted treatment combined with routine outpatient services reduced the predicted probability of violence by 50 percent. ⁴ Currently, 41 state laws allow some form of outpatient commitment, but many of these statutes need to be updated.

Since assisted outpatient treatment promotes treatment compliance, lengthy and frequent hospital stays are reduced with the obvious benefit of cost savings to the government. In an article in Schizophrenia Bulletin, Dr. Peter Weiden and Dr. Mark Olfson calculated that nationwide, over two years, the direct costs of rehospitalization attributable to medication noncompliance is approximately $700 million, with $370 million for the first year and $335 million for the second. Assisted outpatient treatment, by increasing compliance, can generate savings that could be reinvested in community treatment services

The shifting of funds between state and federal government has resulted in deinstutionalization and transinstitutionalization - putting people with severe mental illness on the street, in prisons and jails or in nursing homes and other care facilities where appropriate psychiatric care is not available. The cost to the federal government and to the states is high, but the cost to the families of the person who is too ill to recognize that he or she needs help is even higher. Suicide, violence and victimization are some of the devastating consequences of non-treatment. A lack of awareness that schizophrenia and bipolar disorder are cognitive diseases is evidenced by state and federal policies, which continue to limit treatment options for this high-risk population.

These illnesses will continue to take their toll on consumers, their families and the community at large until mental health services become accessible and available to all individuals suffering from serious mental illness. For this reason, advocates for the seriously mentally ill work to achieve a proper balance in judicial, legislative and policy decisions that affect the lives of persons with serious brain diseases.

Sharra L. Hurd has an M.A. in Mental Health Counseling and is a former employee of the Treatment Advocacy Center (Center). The Center works on national, state and local levels to provide education on the benefits of assisted treatment in an effort to decrease the negative consequences of lack of treatment. Her family's struggles with getting help for her brother, who suffers from manic depression, led Ms. Hurd to the Center. She remains committed to increasing the awareness of serious mental illness and the critical need for accessibility to effective and timely treatment for this population. You may contact the Treatment Advocacy Center by calling 703/294-6001 or visit the Center's web site at www.psychlaws.org.

REFERENCES

¹E. Fuller Torrey, M.D. Out of the Shadows. New York: John Wiley & Sons, Inc., p.102 (1997).
² Torrey, p. 104
³ Marvin S. Swartz, et al. Can Involuntary Outpatient Commitment Reduce Hospital Recidivism? AM. J. Psychiatry, Vol. 156, pg. 1968 (1999)
⁴ Jeffrey W. Swanson.et al., Involuntary Outpatient Commitment and Reduction of Violent Behaviour in Persons with Severe Mental Illness, British J. Psychiatry, 2000, p. 224