Comments at the National Press Club introducing
"The Campaign for the Mind of America" and the Campaign Partners.
Richard Birkel, NAMI Executive Director
Think about what happens when someone has a serious medical emergency such as a heart attack: 911 is called, an ambulance carrying a team of emergency medical technicians arrives. This team provides first aid and transports the patient to the emergency room. There, the patient is stabilized, assessed, and admitted to the hospital by another medical team. Within 24 hours, the insurance company has been contacted, at least one specialist and probably several have seen the patient, additional tests have been ordered and a well established treatment protocol has begun. The family and the family physician have been engaged. Upon discharge, the patient will have a series of follow-up visits with the treating physician, ongoing tests, and long-term rehab as well as illness management education.
Now, imagine with me that this is a psychiatric crisis... 911 is called. But, instead of EMTs, the police arrive in a cruiser. The patient is restrained and handcuffed. If transported to the ER, he or she may be kept for hours or even days because there are no specialists available to evaluate the patient. In some cases the patient will be strapped to a gurney to prevent them from interrupting the work of the emergency department.
The patient may wait days for a spot to open at an overcrowded State Hospital. Often the police officer will have to wait along with the patient for hours while something is figured out. Eventually, the patient may be admitted to a psychiatric unit if one exists. While there, they may have their medications adjusted and they may be forcibly medicated, but it is unlikely that they will see a psychiatrist for anything but a brief visit. Sooner or later they will be discharged, and a state mental health caseworker may be assigned, but that case worker will have such a large case load that they can allot only several hours each month to that particular patient. The patient may be discharged with a prescription for medications… or not… but it is unlikely that there will be any follow-up visits with a psychiatrist and no vocational or other rehabilitation or patient education. Most will be simply left to cope on their own with their families. And, most psychiatric patients will find that there are either no services or limited services available in their community for case management, rehabilitation, job training, therapy, and increasingly, they may find that even access to medication is restricted. They may be forced to switch from an effective medication to one on the states’ preferred drug list; one that is cheaper, but causes more side effects and doesn’t work as well. With no follow-up, no rehabilitation, no ongoing service plan, the wrong medicine, it is inevitable that that patient will be back in the hospital or jail before long.
If you think this is an exaggeration, I assure you it is not. A survey done earlier this year by NAMI of people with serious mental illness in all fifty states found that more than half of people living with schizophrenia, bipolar disorder and major depression had been hospitalized in the last year; 40% had been involved with the police; and 40% had sought emergency treatment. On the other hand, fewer than one in five had received basic case management, job training or therapy of any kind. Fewer than one in five had received any form of patient education to manage their illness. Only one in ten had supported employment which would help them get back to work. As a result, 71% reported annual incomes of less than $20,000 and 20% had incomes of less than $5,000. Two-thirds were unemployed despite the fact that nearly all had high school diplomas and more than a third had a college degree or higher.
Data from the NIMH’s community catchment area study confirm this: only one in five individuals with serious mental illness in the United States is receiving any services. (Presentation by Ron Kessler at the Carter Center, October 2003). In many places, these services simply don’t exist.
President Bush said in his speech announcing the President’s New Freedom Commission on Mental Health (Albuquerque, NM, April 29, 2002), "Our Country must make a commitment. Americans with mental illness deserve our understanding and they deserve excellent care. They deserve a health system that treats their illness with the same urgency as a physical illness."
At the end of the commission’s year-long study and analysis just a few months ago, the Commission said, "Mr. President: Today’s mental health care system is a patchwork relic—the result of disjointed reforms and policies. …the system is in shambles…The commission recommends a fundamental transformation of the nation’s approach to mental health care."
Americans are rightly concerned about the inadequacies of health care in our country today. But one part of health care is dramatically worse than the rest: the care of our nation’s mental health. In this regard, we have hit a new low and we are still in freefall. The situation is increasingly dangerous for those who need care and is an international disgrace. Research by the World Health Organization found that among developed countries including Germany, Canada and The Netherlands, treatment standards and lack of early intervention in America are globally poor by comparison. Compared to other industrialized countries, the US has 1) higher rates of serious mental illness 2) gets people into treatment later, and 3) provides less comprehensive treatment when it is received. (Kessler, 2003)
The inability of Americans with the most serious mental disorders to receive treatment services they need is not something most people are aware of in the United States. If you have private insurance and if you are willing to wait, the truth is that, you can still get access to a therapist for counseling or, you can get a prescription filled to treat depression from your primary care doctor.
However, for the 5-10 million adults (2.6 – 5.4%) and 3-5 million children and youth ages five to seventeen (5 – 9%) who have the most serious disorders, things have never been worse. In many parts of the United States today, there are literally no community-based systems of care for children or adults with serious mental disorders. Patients wait for weeks or even months to get an appointment to see a psychiatrist even if they are in crisis. Case managers, if they exist, have huge caseloads and are frequently unable to provide timely services. Psychiatrists in the public system are scarce and overwhelmed with patients. The kinds of programs that have been proven to work like assertive community treatment programs, with proven effectiveness in addressing the needs of people with multiple and complicated needs are unavailable in most places. In many communities, hospital beds for people in acute psychiatric crisis are virtually non-existent. Waiting lists for Section 8 housing and other affordable housing options are many years long. Finally, the budget crisis in the states is placing even access to the medications patients need to stay out of the hospital at risk.
The crisis in access to treatment for mental disorders in our communities means that our hospital emergency departments and our jails have become holding pens for individuals with the most serious mental disorders. And that means that law enforcement and emergency department personnel as well as the criminal justice system have become the "de facto" mental health treatment providers in the United States.
A report issued by Human Rights Watch last week which is consistent with data from the Department of Justice, shows that between 200,000 and 300,000 men and women in United States prisons suffer from mental disorders including schizophrenia, bipolar disorder and major depression. An estimated 70,000 are psychotic on any given day.
In the United States, there are three times more people with mental illness in prisons than in psychiatric hospitals.
The situation for youth is even worse. Ron Kessler, the Harvard researcher and principal investigator for both the World Health Organization research and the U.S. Catchment Area Studies, recently told the Mind of America Campaign advisory board: "mental illnesses are the leading cause of chronic disability among America’s youth. Nothing else comes close… not accidents, not HIV/AIDS, not injuries, not diabetes, nothing."
While as many as 1 in 10 young Americans may have a serious mental disorder, 60-80% receive no treatment at all ((Barbara Burns, Duke University, Carter Center report). Without treatment, these students cannot learn and cannot succeed. As a result, students with serious emotional disturbance have the highest rates of school failure and more than 50% drop out before graduation. Recent Research has also found that more than 70 % of youth in juvenile corrections have a diagnosable mental disorder. The other alternative of course…. is death.
Suicide is 4th leading cause of death 10-14 yr olds…. 3rd leading cause among those 15-24 and second for 25-34 year olds. Suicide claims 30,000 lives in the US every year. AND, in 1999, 152,000 hospital admissions and 700,000 ER visits were for self harming behavior; attempted suicides. The vast majority of people who die by suicide have a mental illness, often undiagnosed or untreated.
As a way to summarize the terrible consequences of the continuing failure of mental health policy in the United States, think of it this way:
5% of adults with the most serious mental disorders ( about ten million people) comprise 35% of recipients of Social Security Income, 28% of recipients of Supplentary Social Security Income (SSDI), nearly 20% of people in jails and prisons, 40% of the homeless, and a quarter of people who crowd our emergency rooms.
The truth is, as Michael Hogan (Chair of the New Freedom Commission) has said: we are paying form mental illness in all the wrong places. And, the cost of our misspent dollars is an increasing burden of disability. Indeed, the World Health Organization (WHO) identified mental illnesses as the leading causes of disability in the United States, Canada, and Europe. The study found that mental disorders including depression, bipolar disorder and schizophrenia account for nearly 25% of all disability measured in years of productive life lost, with an average of more than 15 years lost. Because these lost years come early in life, in the teens and young adulthood, a time of maximum learning and productivity, the cost to our economy is more than three hundred billion dollars each year. The National Governor’s Association recently reported that there are more than 1 million Americans with psychiatric diagnoses living on SSI, SSDI and Medicaid. Michael Hogan, Chair of the President’s New Freedom Commission summed up that situation by saying, "We are paying an ever growing number of people an increasingly inadequate amount of money to stay disabled". (Comments at the Carter Center, October 2003).
How could this situation happen? How could things get this bad? The truth is, we have found it all too easy to look away from the problems facing people living with mental illnesses, to blame them and their families for their illness, and to fear and stigmatize them. In 2001 the Surgeon General wrote: "Stigmatization of people with mental disorders is manifested by bias, distrust, stereotyping, fear, embarrassment, anger, and/or avoidance" "Stigma leads the (public) to avoid living, socializing or working with, renting to, or employing people with mental disorders... …Reduces access to resources and opportunities, and leads to low self-esteem, isolation, and hopelessness"
"It deters the public from seeking and wanting to pay for care. Stigma results in outright discrimination and abuse. More tragically, it deprives people of their dignity and interferes with their full participation in society"
That same year, the President of the World Health Organization after completing their international study of mental disorders wrote: "In more ways than one we make this simple point: we have the means and the scientific knowledge to help people with mental and brain disorders...Governments have been remiss as has been the public health community. By accident or by design, we are all responsible for this situation."
That brings us to our Campaign. We have decided to come together to achieve some things that none of us can achieve on our own, some things we believe are essential to the well being of every American community and every citizen. We are asking for a new look at mental health services in America and a new commitment to build and maintain a treatment system infrastructure in our communities. We seek assurance that Americans with serious mental illnesses will have access to the treatment services they need when they need them. To go further down the road of restricting access to mental health treatments is not only bad policy, it is dangerous.
Our policy recommendations are straightforward… They begin with the need for early intervention and support for mental health services in schools. Increasingly we recognize that mental disorders begin early in life and, if they are identified and treated, good outcomes are likely. However, in the United States, as we have seen, diagnosis is typically too late and treatment is delayed for years. For depression, the average length of time between the first onset of serious depressive symptoms and treatment is ten years (World Health Organization, 2000). This has to end. It means that a thirteen year old who suffers her first depressive episode in eighth grade may drop out of school, make career decisions, enter a bad marriage, have a child and make hundreds of other crucial life decisions and perhaps even end her life before she is twenty three; all the time suffering from undiagnosed and untreated depression.
We also call for a commitment to maintain effective community treatment including acute care and crisis services. Psychiatric crises, like other health crises, must be planned for and expected. First responders including police, teachers, families and emergency personnel must be trained and equipped to address psychiatric emergencies with the same urgency and compassion they attend to other health crises and this must be done in cooperation with mental health professionals.
We also urge increased attention to supported housing and for much greater attention to employment needs for people in recovery from mental disorders. Without a safe place to live and purposeful activity, recovery cannot be fully achieved. Finally, we call for greater accountability and urge that states report not only on their expenditures on mental health treatment each year, but the results and outcomes for consumers that result from those expenditures as well.
The organizations gathered here today represent community leaders who are living the mental health crisis in America every day. Each of us has seen the need for change and each of us is committed to raise our voices together to assure that change occurs.