As part of the Guardian’s ongoing investigation into American mental health care, we asked you to help us illustrate the effects of the lack of access to mental health treatment. We received an overwhelming response.
Today, we’re publishing five stories that show the personal and material cost that the families and friends of the mentally ill must take on when caring for a loved one.
‘My mother texts me every day to make sure I’m still alive’
I’m a junior at ASU studying Filmmaking and Fine Art, and I’m living with Bipolar Disorder Type Two Rapid Cycling. I see a psychiatrist and psychotherapist on a weekly basis; these appointments are an indispensable part of my treatment. My medications are constantly being adjusted to find a balance, and psychotherapy brings me awareness of the patterns of my illness. Medication and professionals, however, make up only half the arsenal to combat my illness. My family and friends are my greatest allies. They revitalize me from the eerie brokenness of depression, and effectively keep me grounded in the electric-fury of hypomania.
I’ve been diagnosed and seeing healthcare professionals for over 18 months now. My father is a police officer and receives great healthcare benefits. I’m still on his insurance plan and he covers the co-payments of the doctor’s visits.
The monthly cost of seeing both of my doctors once a week, is about $400. Additionally medication costs about $30 a month. That’s nearly $8,000 for 18 months. Plus, $350 for a 10-day hospital stay after a suicide attempt.
Before I was diagnosed or received any sort of treatment I was dysfunctional, indifferent towards my future, suicidal, self-destructive, self-medicating, perpetually moody, agitated, and I increasingly isolated myself from society. Medical treatment provided me the capacity to counter my illness, my family and friends became the excuse I constantly told myself to keep fighting the affliction. I’m very convinced that I wouldn’t be alive today if it wasn’t for others looking out for me and showing kindness.
I try not to think of myself as a burden on other people, although I’m sure it’s true to an extent.
I’ve cost my parents a small fortune, and I’ve seen it affect them financially. They’ve had to change their lifestyle, to take care of me, to be there for me. My mother texts me every day to make sure I’m still alive.
I’m not cured, mine isn’t a story of transcendence. I don’t believe I’ll ever break out of my mental prison. I don’t even know how many more years of life I have left, but I can say that I wasn’t forgotten or ignored, my life was recognized by others as having enough value to at least try and fight. – John, Phoenix, Arizona
‘When my daughter killed herself, I died too’
My daughter had been diagnosed with clinical depression as early as eight years old. Living in San Diego, we had access to outstanding healthcare. We took her regularly to therapists as she was on my excellent health insurance plan. Her depression, with medication, was manageable.
She did well in school, even though we had a number of problems with her moodiness. She went on to college, graduated, and no longer qualified for my health plan. She got a temp job as a teacher for a year, then was out of a work.
I started paying for her doctor’s visits and medication. After spending over $40,000 dollars that I’d borrowed from my IRA, I was tapped out.
She had to rely on our county’s public mental health care to get the treatment and meds she needed.
There are some excellent and well-meaning people that work for counties in mental health, but they are so overburdened and burnt out they can only do so much.
At the age of 33, my daughter committed suicide. I died too.
I was unable to continue working. I wanted to work till I was 75, but retired at 72 because I simply couldn’t do it anymore. I worked for the Army Corps of Engineers and found myself just sitting and staring at a computer screen all day and accomplishing little. That was five years ago, and my nightmares are now just beginning to subside and I can function reasonably well now. – Jim Fawcett, Houston, Texas
‘It was a miracle when we found my brother a place to live’
If you would have told me 25 years ago that my family and I would still be caring for my brother, I wouldn’t have believed you. He suffers from schizophrenia and has wreaked havoc on our family emotionally, physically and financially.
When we found him Section 8 housing in San Rafael 12 years ago, it was a miracle and only happened because we knew somebody who knew somebody.
This year, the Non Smoking Ordinance rendered him homeless. The man who drafted this legislation told me he ‘just didn’t think about’ how the law would impact the mentally and physically disabled people who simply are unable to quit.
The people who owned and managed the housing were so compassionate and tolerant toward him, and tried in vain to get him to stop smoking on the premises before he was kicked out. But he really didn’t belong there. He belongs in institutionalized housing and care.
Now, we are housing him in a warehouse, trying to care for him. Families should not have to provide psychiatric care for their loved ones. It just doesn’t work. I am trying to scrape together a loan to buy him a place so that he can’t get kicked out again.
A person suffering from untreated schizophrenia simply does not have the capability to make decisions on their own to benefit them. I firmly believe in compassionate but forced medication followed by care.
People don’t have a clue of the horror you have to go through to care for a loved one struggling with mental illness. I can’t really talk to people about it because they just don’t understand. Basically, if you are mentally ill in America, you are shit outta luck. – Robert Butlerman, Bay Area, CA
‘In a nation with a better mental health care, I might have been relieved by the knowledge that my brother was being cared for, rather than the fact that he is dead’
My family was briefly involved in caregiving for my brother, before he tragically ended his own life. After he died, I read his journal and learned he was living a nightmare: convinced he was in hell, that we were demonic forces out to get him, and also suffering from visions of self-grandeur.
In his early twenties, he began exhibiting symptoms of schizophrenia and bipolar disorder, which exacerbated rapidly and aggressively. To our great distress, there was little we could do. John (not his real name) was paranoid and distrustful, and resistant to any form of contact from us.
In 2010, the police found John living in an airport. My mother was able to convince him to come home with her, and our family was reunited for Christmas, which would be our last together.
It was heartbreaking to witness him in such a state of misery and to not be able to help him. On Christmas Eve, in a fit of rage, John threatened to kill himself if my parents did not give him money for a plane ticket, we had the great relief of hearing the words that we knew could get him forcibly institutionalized. We called the police and were able to have him brought to the hospital by ambulance.
My brother was released from the hospital after 10 days, which is not even enough time for a proper medication schedule to take effect. A mere month and a half after he was released from the hospital, he turned up at a San Francisco hospital, where he checked himself in and was found to be dehydrated. He was given some sort of treatment and promptly released. From the hospital, he headed directly to the Golden Gate bridge, which he jumped off.
Only because of John’s hospital visit, from which he was still wearing a wristband, were authorities able to identify his body.
While I would give anything to have my brother back, it is terrifying to imagine many more years of the stress we experienced that Christmas, trying to constantly chase John down and keep him alive. He was suffering horribly during that last year; life was torturous for him, and his inability to care for himself made everything even more painful. When he was alive, every minute of every day I wondered, “Where is he now? Is he in pain? Is he scared? Is he hungry or thirsty? Is he safe?” I worried about the long-term cost – financial and emotional – to my family to keep him alive. I am no longer plagued by those questions. In a nation with a better mental health care system, I might have been relieved of them by the knowledge that he was being cared for, rather than the knowledge that he is dead. – Amy, Chicago, Illinois
‘I have given up my own business and we have been through bankruptcy’
I am the caregiver for a mentally ill daughter with severe OCD, PTSD, and depression. I am daily support for checking her moods, administering her medications, and driving her to appointments. I am the first line to call emergency services in crisis, or to take her to the emergency room at the hospital.
She has been ill for 10 years. She is a college graduate who had been holding down a job and living independently. Our experience with the mental health system is that it is uneven and inconsistent with support and providers. There is a lack of agreement as to her best treatment and what local services exist.
I left my job so I could provide 24/7 support for the last decade. I have had to give up my own business and we have been through bankruptcy. Some local services for “adult daycare” have come available in just the last year where I can get some breaks.
Conservatively we have been out $80,000 a year in my lost earnings and $60,000 in hers. Treatment and medication costs for her run approx. $2,000 monthly.
I have some elements of depression in my own life due to the massive shift in family lifestyle and goals. There has been tremendous strain on our marriage, and we have lost some friends who did not understand what we were going through. My career is dead-ended and now all I have waiting for me is eventual retirement.
Our daughter lives with us so there is constant tension in the home. Vacations have been non-existent for years now. We live very frugally.
It is very peculiar that there is still tremendous social stigma connected to mental health disorders and their treatment. Even though great strides have been made in understanding brain disease, there is still a persistent element in society that does not believe mental illness exists and that people just need to “snap out of it.” It is viewed as some sort of moral failure, as opposed to a brain that has a distinct disease process going on that can be identified and treated. Thank God for NAMI and the work they do educating the public and supporting families. – Rob, Gresham, Oregon
Jails Function as New Asylums
The man running the largest mental health institution in the United States is not a doctor. He did not major in psychiatry, nor did he spend his formative years studying bipolar disorder or working with [people with schizophrenia].
That man is me, a history major turned lawyer who went on to become the sheriff here. As sheriff, I run the Cook County Jail, the largest jail on a single site in the country with approximately 10,000 inmates on any given day – and approximately 30% of them suffering from a serious mental illness.
With dramatic and continued cuts to mental health funding on the federal and local level, county jails and state prisons are where the majority of our mental health care is being administered today. According to the Treatment Advocacy Center, the largest mental health institutions in 44 of our 50 states are jails or prisons. And 10 times as many mentally ill individuals reside in jails and prisons than in state mental health hospitals, where they should.
The conclusion is heartbreaking but no longer undeniable: we have criminalized mental illness in America, and you are paying for it.
It is shameful. Deplorable. Immoral. Simply put, the mentally ill belong in treatment – not in jail. It would be cheaper that way, too.
While some of the mentally ill population in our jail has been charged with violent crimes, the majority has been charged with non-violent, lesser offenses such as retail theft, trespassing and drug possession. These inmates end up staying because they can’t afford to post bail – or because they have nowhere to go. Ultimately, many of them are sentenced to probation. Often, their cases are dropped. Then they’re released into the community, and the vicious and predictable cycle repeats.
There are workarounds to break the cycle:
- we’ve tried to re-route new inmates to treatment before they arrive;
- we’ve introduced discharge plans to place inmates in treatment when they leave;
- we remain available to former inmates going through mental health crises or going off their medication;
- more than 4,000 people who started an application in Cook County Jail for Medicaid coverage under the Affordable Care Act are now carrying an insurance card;
- and while they’re in the jail, many inmates note that it’s where they get their best – or only – treatment, which is simply sad.
But the priority needs to be funding mental health care, not throwing mentally ill patients-in-waiting behind bars. It’s not only the moral thing to do – it’s the most cost-effective solution.
From 2009 to 2012, states cut mental health funding by $1.6bn (nearly 10%), according to the National Alliance on Mental Illness. The current math here in Chicago now adds up like this:
But this is about more than money. The answer to treating mental illness is not incarceration – it’s case management. Dedicated case managers could ensure that the mentally ill remain medicated, could support them through crisis, and should give them the best possible chance at a sustained and productive life in the community. This is the humane thing to do, and it’s far less expensive than housing them in jails and prisons.
Much more needs to be done. In the American criminal justice system, the jail is the last car on a long train. At every step before a person ends up in jail, there is discretion – discretion to arrest, to charge, to set bond. When none of the entities with that discretion bother to take mental illness into account, what ensues is this nearly irreparable mess of a system.
Righting these wrongs requires the assistance of many cars on that train – including those working in the criminal justice system, in the mental health field, and state and federal legislators to support this vulnerable population.
With just a small measure of critical thought and a manageable financial investment, we can close the revolving door between American streets and jails. The time is long past due for the mentally ill to get the treatment they so deserve – so that sheriffs like me can get back to worrying about the real criminals.
Thomas J Dart is the Cook County Sheriff in Illinois, and a former prosecutor and state legislator.
Fixing the Mental Health System: Five Suggestions
No genuine system of mental health care exists in the United States. This country’s diagnosis and treatment of mental health problems are fragmented across a variety of providers and payers – and they are all too often unaffordable. If you think about it, the list of complications is almost endless:
- Families of loved ones with mental illness recount horror stories, as several have in the Guardian’s interactive series this week.
- Patients transitioning from inpatient to outpatient treatment often fall between the cracks.
- Mental health and general medical treatment are rarely coordinated.
- Substance abuse treatment usually takes place in an entirely different system altogether, with little coordination.
- Auxiliary interventions that are so essential to so many people with serious mental illnesses – supported housing, employment training, social skills training – are offered through a different set of agencies altogether … if they are available at all.
Our mental health system is a non-system – and a dysfunctional non-system at that.
The evidence is everywhere that things have been getting worse – more and more Americans with mental illness are stranded in emergency rooms, for example, and simply for want of hospital beds. And that is in no small part because nobody has tried, in more than 50 years, to design a comprehensive mental health system for all Americans.
It’s time to try again.
The last major rethinking of the system’s flaws began, in 1955, with an act of Congress that resulted in the appointment of something called the Joint Commission on Mental Illness and Health. The commission’s report, Action for Mental Health, offered a vision of community-based mental health treatment: a new clinic would be created for every 50,000 persons – for prevention and early intervention services. People who once had to wait for their symptoms to become bad enough to go to the hospital before anything could be done? They would receive prompt care in their own communities and return quickly to life as usual – back at work, living with their families, seeing their friends.
Soon came the downsizing of large state hospitals and, in 1963, the passage of the Community Mental Health Act. That legislation envisioned the creation of a network of mental health centers spanning the country, so that every citizen would have a single point of access. A person experiencing early symptoms of mental disorder could receive emergency, inpatient, partial hospitalization and outpatient care – all in the same place – while her family was educated about her disorder and how best they could help.
Unfortunately, fewer than half of the centers were ever built, and adequate support for their operation was never provided. As federal funding ceased, many of the existing centers shifted away from caring for the most seriously ill … to serving paying customers. The promise of an effective community-based system of care remains unfulfilled.
Yet we are, half a century later, in a different world for which a different vision may be required – a vision of comprehensive care aimed at helping people with mental illness continue to be functioning members of society. But the essential notion of having an integrated system of healthcare – a system that recognizes the spectrum of needs associated with mental disorders, from family therapy to medication to supported housing – is too important to relinquish.
President Obama can kick-start planning for a genuine system of mental health care, by establishing a presidential commission to suggest realistic, re-inventive steps forward.
It could be a landmark moment, right now, today.
Here’s what it might take:
- No one struggling with depression or trying to find help for a troubled child should have to spend weeks figuring out whom to call. In every area of the country, a single point of contact should be created to respond to questions and triage people in need of help to appropriate services. Today, much of this information can be provided online – think of the live chat boxes on many business and banking websites, or even the pop-up video for customer support on Amazon’s Kindle Fire tablet.
- Today, paying for mental health care is nobody’s responsibility. Insurers pay as little as possible, often denying claims on flimsy grounds. States have cut more than $4bn from their mental health budgets in the last six years. The federal government directly contributes only a tiny amount to supporting mental health treatment beyond the coverage it provides through Medicare and Medicaid. A joint federal-state commitment is needed to funding the infrastructure of a care system, while insurers’ feet are held to fire to make certain they live up their obligations under the Mental Health Parity Act.
In the 21st century, with our instantaneous electronic communications, it may be less important to house these kinds of services in a single site – but it’s no less important to insure that they are all available.
A half-century of patchwork efforts to improve one or another aspect of the mental health system has resulted in abject failure. Unless we take a comprehensive approach, and mend the safety net that protects us all, we will fail again.
Let’s get to work.
Paul S Appelbaum is the Dollard Professor of Psychiatry, Medicine and Law at Columbia University, and a former president of the American Psychiatric Association.