I have read Insane Consequences: How the Mental Health Industry Fails the Mentally Ill a couple of times and am still contemplating it. It also inspired me to research further into how we treat the seriously mentally ill in America.
In the book, author DJ Jaffe takes on what he calls the “mental health industry,” and I think that is a fair characterization. He is not the only writer to use the phrase, and he confronts that industry with a voice that reminds me of a prosecuting attorney on a mission.
Jaffe became involved in the mental health system in the 1980s when his wife’s 18 year old sister, Lynn, came to New York from Wisconsin to live with them. Lynn had been a high performing high school student who began to have behavioral issues with her Hungarian immigrant mom, and Jaffe thought that coming to New York to live with “aging hippies” might help.
Things went well at first, but Lynn’s behavior became more and more difficult – from screaming at voices that only she could hear, to paranoia. Jaffe’s attempts to get her help engulfed him in the mental health system and all its shortcomings. The experience started him on “a thirty-year journey to try to find out what is wrong with the mental health system and what can be done to fix it.”
This book reminded me of another I read back in the 1970s, Susan Sheehan’s Is There No Place on Earth for Me. Sheehan’s book told the story of Sylvia Frumkin, another highly intelligent young woman who developed schizophrenia at a young age and was in and out of hospitals and the various treatments of the 70s.
Since that time, I have worked as a provider at both a state hospital and a public community mental health center. I have worked with criminal justice clients (community corrections, state probation and parole, including intensive probation and parole, federal probation and parole, and inmates at the jail). I have also done pre-admission screenings for detention and hospitalization. As a provider, I felt many of the frustrations that Jaffe describes as a caregiver.
While Sheehan took us through the system with the story of one woman, Jaffe takes a step by step approach in laying out what he thinks is wrong with the mental health system in America. The first fifteen chapters are about how and why things are wrong, and the final two are recommendations for how to do better.
He begins rather jarringly with a mug shot gallery of “infamous mentally ill adults who went off treatment,” all murderers. What Jaffe emphasizes over and over again is that our system does not focus on the seriously mentally ill; those with “schizophrenia spectrum disorders, major bipolar disorder and severe major depression.”
“It is only the mental health industry that insists ‘all mental illness is serious'” writes Jaffe. And the seriously mentally ill get the least focus and resources from the mental health industry.
He makes a distinction between those who advocate for the seriously mentally ill and those who advocate for the mental health industry. Those who advocate for seriously mentally ill people include organizations such as the American College of Emergency Physicians, American Psychiatric Nurses Association, National Sheriff’s Association, International Association of Chiefs of Police, the Treatment Advocacy Center, Clubhouse International, his own Mental Illness Policy Org, and local chapters of National Alliance on Mental Illness (NAMI).
Advocates for the mental health industry include National Coalition for Mental Health Recovery, National Empowerment Center, Mental Health America, American Psychological Association, American Civil Liberties Union, Carter Center, and NAMI’s national office.
The divide is essentially between those who advocate for the medical model and those who advocate for the recovery model. For Jaffe, the recovery movement focuses too much on individual rights and not enough on outcomes. He feels that too much time is spent on programs and methods like peer support and prevention, which he says are not researched, at least by independent researchers.
Indeed, Jaffe writes, serious mental illness cannot be prevented. The US spends way too much time and money on treating the worried well and on redefining what were once just everyday behaviors like worry, stress, and bullying as mental illnesses. The industry then makes money by treating those with the least need but the most resources. Meanwhile, those with the most need and the least resources are deinstitutionalized from mental hospitals to jail, prison, and the streets. Jails have become the “treatment” choice for seriously mentally ill people.
Because he addresses such a broad scope of issues, the wealth of evidence for each is abbreviated. In this relatively short work, Jaffe does have to use a broad brush that sometimes misses details that could have given even more support for what he advocates. For example, he uses the story of Virginia State Senator Creigh Deeds and his son, Gus. Senator Deeds attempted to get help for his son, and an evaluator found cause for hospitalization but could not find a hospital bed within the time required by state statute, and they were sent home. His son attacked Deeds the next morning, and then killed himself. There is much more to the story that Jaffe does not cover. Jaffe does include 78 pages of notes at the end of the book, in which he goes into a bit more depth on some of the studies and incidents.
Jaffe also includes eighteen pages of researched and well thought out solutions that range from cutting what he sees as wasteful programs, while consolidating and coordinating others to specific changes in law and policies such as HIPAA and FERPA. He looks at civil commitment reforms, law enforcement, the use of medication and electroconvulsive therapy (ECT), group homes, intensive case management, assertive community treatment teams, and mandated assistive outpatient treatment.
I was troubled by some things left out of this work. From his position, Jaffe naturally takes on recovery-oriented advocates like Robert Whitaker, who wrote Mad In America. He doesn’t address how the conditions of the “snake pits” of mental hospitals transitioned to the horrors experienced by the mentally ill in jails. He doesn’t seem to address that there are programs, such as described by Whitaker, that don’t require forced medication and work. He also doesn’t address the cultural aspects which have had a role in bringing about the social justice aspects of treatment. For example, a black man in the US is more likely to be diagnosed with schizophrenia than a white man with the same symptoms.
The way the diagnoses of the DSM are defined has been criticized over the years, and is an American-only model. There are good reasons for a call for rights for those diagnosed as mentally ill. Jaffe referenced the Deeds case and the Virginia Tech shootings in this book. What he left out is that Virginia also has the legacy of Cary Buck and forced sterilization of those diagnosed as “mentally deficient,” though Buck’s diagnosis was a sham.
Jaffe includes ECT for treatment, but not transcranial magnetic stimulation. In my years working in research on re-hospitalization, one factor that was foremost in return to the hospital was the expressed emotion of the system where the individual lived in the community, for example, the family. There is no mention of the measure of expressed emotion in this book. I would also argue that one read Models of Madness edited by Read, Mosher, and Bentall for another view on schizophrenia.
Jaffe’s work is thoughtful and a good place to start a dialogue around working towards solutions on how to treat people diagnosed with mental illness, a question that has been with us for centuries. The mental health system has too often been used as a system of social control. For example, during the time of slavery, slaves who wanted freedom were considered mentally ill. It wasn’t so long ago that homosexuality was considered a mental illness. Jaffe does focus on the seriously mentally ill and goes to great lengths to define that. He also goes to great lengths to define outcomes for improvement in treatment such as “homelessness, arrests, violence, hospitalizations, or suicides” and not “soft measures like hopefulness, sense of empowerment and wellness.” Jaffe’s ideas and focus deserve serious consideration.
You can listen to Jaffe talk a bit about his experience and ideas on a panel at the Manhattan Institute on October 25, 2017 here. Also on the panel is Peter Early who wrote Crazy: A Father’s Search Through America’s Mental Health Madness. If you have an interest in this topic, and I hope you do, I would also recommend Art Levine’s Mental Health Inc: How Corruption, Lax Oversight, and Failed Reforms Endanger Our Most Vulnerable Citizens.
Health care in general in this country is broken, and treatment for serious mental illness is very broken. In solution focused therapy, the solution does not necessarily have to follow from the problem. This is a very complex problem with a long history and many variables.
What years of experience has taught me is that you work with the person in front of you based on what they need, not with a diagnosis and a one size fits all answer. What I hope is that at some point we can all come together and agree on how we want to treat each other and what our responsibilities are to each other. Is treatment for illness – including mental illness, which by law should receive parity in insurance but does not – a civil and human right or is it a commodity? Right now in this country it seems to be seen much more as a commodity and not something that we all deserve, particularly the seriously mentally ill and those with co-morbid substance use issues.
Among all the health care silos, these are the people with the least power. While they may be the most difficult population to work with and the least able to pay for services among those diagnosed with a mental disorder, the mental health industry needs to serve them and do so in the best possible way for each person.
Until we can reach some consensus as to what constitutes treating someone with fairness, compassion, and respect, we will continue in these circles and the system will stay broken. I am grateful for Jaffe and all the other authors I mentioned that keep the discussion going and hopefully headed to the best outcomes we can achieve.
On December 15, 2017, a federal panel urged better care for the seriously mentally ill. The Interdepartmental Serious Mental Illness Coordinating Committee (ISMICC) “was created by the 21st Century Cures Act. It has five years to complete its mission of enhancing coordination across federal agencies to improve service access and delivery of care for people with SMI and serious emotional disturbance (SED) and their families.”
Now the question is, will the words lead to action, and what action will that be.
Insane Consequences: How the Mental Health Industry Fails the Mentally Ill
Hard Cover, 363 pages