(5-1-17) Given the ongoing dispute about who will be the first Assistant Secretary for mental health and substance abuse, it seems a fitting time to discuss D.J. Jaffe’s new book, Insane Consequences: How the Mental Health Industry Fails The Mentally Ill.
For the past thirty years, Jaffe has been deeply involved in advocating for better care for the seriously mentally ill and his book provides a roadmap for what he is convinced needs to be done to rescue and reform our current system.
Jaffe became an advocate because of a family member. In his case, it was his wife’s younger sister, Lynn. What happened to Jaffe, his wife, Rose, and to Lynn has become an all too common story.
She started becoming paranoid, convinced that conversations taking place across the street involved plots to kill her…We took her to the emergency room. She was admitted, diagnosed, medicated, and provided rehabilitative therapy. But to “protect her privacy,” her doctor wouldn’t tell us her diagnosis, what medication she’d given Lynn, or what would happen when her hospitalization ended. Lynn returned home to us and stopped taking the antipsychotic medications we didn’t even know she’d been prescribed…”
Thus, Jaffe was thrust into our baffling mental health care system which he quickly found to be both frustrating and lacking. Determined to help change it, he began by knocking on the door of the National Alliance on Mental Illness, raising money for its New York City chapter and eventually joining its board. From there, he moved to the Treatment Advocacy Center where he became a strong advocate for Assisted Outpatient Treatment and a dedicated admirer of Dr. E. Fuller Torrey, one of TAC’s founders. More recently, he has launched his own organization, Mental Illness Policy. Org, which he describes as “a nonpartisan think tank that creates detailed policy analyses for legislators, the media and advocates.”
It is his untiring work as a self-admitted policy wonk that has made him a favorite of reporters eager to have someone explain or react to the newest unintelligible legislation that is churning its way through either a state or federal legislative body. Most recently, he worked closely with Rep. Tim Murphy (R. Pa.) and his staff in developing the Helping Families In Mental Health Crisis Act, which is designed to shift federal dollars away from what often are called “wellness” programs and focus on “the seriously mentally ill.” But let’s allow him to explain:
“America’s mental health system is insane, expensive, and ineffective. Under the guise of protecting civil rights, it is killing people. Under the guise of increasing freedom, it is increasing incarceration. Under the guise of facilitating recovery, it ensures that fewer recover. In the name of protecting privacy, it causes suicide. America treats the least seriously ill (“the worried well”) and forces the most seriously ill to fend for themselves. The ability to get help has become inversely related to need. We move sick people from hospitals to jails and label it progress. Government funds those who create the problems rather than those with solutions. The more dysfunctional the system becomes, the more money we throw at it. Our mental health system is not based on science and has nothing to do with compassion. As a result, there are ten times more people with mental illness incarcerated as hospitalized. Being mentally ill has essentially become a crime.”
Anyone who is familiar with Jaffe has heard him talk about the “seriously mentally ill” — SMI in acronym shorthand — who he concludes are best defined as adults diagnosed with schizophrenia spectrum disorders, major bipolar disorder, and severe major depression.
While other illnesses may also be serious if they substantially affect the ability to function, including them does not raise the percentage much. The line between “any” mental illness and ‘serious’ mental illness is debatable, but the extremities are clear…It is only the mental health industry that insists ‘all’ mental illness is serious.
What this means is that Jaffe, like many other family members who are grappling with adult children who are homeless, addicted, and refuse help, self-differentiates from the problems faced by a parent whose child has restless leg syndrome which is, indeed, part of the the DSM5, which identifies mental disorders. Such a wide net proves useful when groups such as NAMI or the National Institute of Mental Health proclaim that one-in-five Americans grapple with a mental illness each year, but as Jaffe and other researchers have consistently pointed out, those who are hit with SMIs account for roughly ten million Americans. Given that the United States population is some 321 million, that 10 million figure falls much shorter than those often recited 20 to 25 percent figures.
The problem, according to Jaffe, is that the focus, money and attention in our nation is focused on helping nearly everyone but those ten million and the result is at least 140,000 SMI Americans being homeless, 392,037 in jails and prisons, 755,360 on probation or parole and at least 95,000 who need hospitalization unable to find a bed.
When the mental “illness” system disappeared and the mental “health” system replaced it, homelessness, hospitalization, crime, arrest, violence, incarceration, shootings of and by police, and expenditures for mental illness all went up. The only metrics going down are the number of psychiatric beds available to treat the seriously mentally ill and the number of nonprofits, government agencies, advocates and politicians that care. We’re in this mess because the mental health industry convinced the government to abandon treatment the most seriously mentally ill in favor of serving the highest functioning.
Jaffe lays out his argument in 17 easy to read chapters that cover 242 pages. The remaining 111 pages include an appendix and footnotes that are an incredible rich resource for anyone who wants to know what has been studied and written about mental illness.
One of the most fascinating and disturbing chapters in Jaffe’s book for me, was not his recounting of violence committed by SMI shooters ranging from John Hinckley to James Holmes (Aurora, Colorado) to Virginia Tech’s Seun-Hui Cho. Rather it was Chapter 14, where Jaffe chronologically lists our federal government’s serial attempts to help the sickest of the sick among us through various acts and reports.
Beginning of List: (Skip to bottom if you get tired of reading these titles!)
1946-1949 National Mental Health Act, which created the National Institute of Mental Health
1955-1960, Mental Health Study Act, which created the 1960 Action for Mental Health report to the nation
1961-19634: John F. Kennedy’s Interagency committee on mental health and the mental health retardation facilities Construction Act establishing Community Mental Health Centers.
1965: Medicaid and Medicare, with funds health care for individuals with mental illnesses, but not if they were being housed in “Institutions for Mental Diseases” larger than sixteen beds – a rule aimed at closing state hospitals.
1956 – Social Security Disability Insurance (SSDI) for mental health programs, paying more than $50 billion in benefits to “the mentally disabled.”
1972 Supplemental Security Income (SSI) income to the poor who are disabled, including by mental illnesses.
1978: President Carter’s Commission on Mental Health and the Mental Health Systems Act.
1980 Civil Rights of Institutionalized Persons Act (CRIPA)
1986: Emergency Medicine Treatment and Labor Act (required hospitals to treat persons who can’t pay.)
1986 Protection and Advocacy for Individuals With Mental Illness Act (created protection and advocacy organizations for persons with mental illnesses)
1990-2014 Americans with Disabilities Act, Amendments and the Olmstead Interpretation
1991 NIMH Report Caring for People with Severe Mental Disorders, A National Plan of Research to Improve Services
1992 Alcohol, Drug Abuse, Mental Health Administration reorganization Act.
1993 President Clinton’s Task Force on National Health Care Reform
1996 Mental Health Parity Act
1996 Health Insurance Portability and Accountability Act (HIPAA and FERPA)
1999 Surgeon General’s Report on Mental Health
2000 National Council on Disabilities: From Privileges to Rights: People Labeled with Psychiatric Disabilities Speak for Themselves
2003 Medicare Prescription Drug, Improvement and Modernization Act
2003 President Bush’s New Freedom Commission on Mental Health Report
2004 Individuals with Disabilities Education Act
2008 Mental Health Parity and Addiction Equity Act
2010 Affordable Car Act
2013: White House Summit – A National Conversation about Mental Health” after Newtown shooting
2016: The Helping Families In Mental Health Crisis Act and Mental Health and Safe Communities Act
End of list
And yet, as Jaffe skillfully points out, despite almost yearly attempts to create a better system, the odds of him helping his sister-in-law today are no better than they were 30 years ago, and oddly, are probably much worse.
Jaffe leaves no one unscathed in casting blame, but zeros in specifically on the Substance Abuse and Mental Health Services Administration (SAMHSA) which he blames for replacing the scientifically based “medical model” with a “SAMHSA-invented Recovery Model.”
Much of his criticism of SAMHSA is familiar turf already exposed by Dr. Torrey and Rep. Murphy during hearings that raised charges of SAMHSA funding and favoring anti-psychiatry efforts.
But he also bites the hands of NAMI, the Copeland Center (creators of WRAP), the ACLU, The Bazelon Center for Mental Health Law, Mental Health America, the National Council for Behavioral Health, the American Hospital Association, the National Association of Psychiatric Health Systems, the American Psychiatric Association, as well as dozens of others, including celebrity-centric mental health organizations, such as Bring Change 2 Mind and the Carter Center established by former President Jimmy and Rosalynn Carter.
The “Good Guys” include the Treatment Advocacy Center (which will receive any royalties that his book generates), Clubhouse International, the National Sheriff’s Association, the International Association of Chiefs of Police, the Stanley Medical Research Institute, as well as his own, self founded organization.
Clearly, Jaffe is not expecting to be invited to speak at many mental health group’s fundraisers or conventions.
In separate chapters, he takes on the mental health care industry for valuing profits over patients, the courts for stupid judicial rulings and the emergence of recovery/wellness programs that he claims do little if any good for the SMI.
His solutions are carefully detailed in seventeen pages, and echo his ongoing thesis: that money and services should be targeted for the sickest and that we need to stop talking about mental “health” and call it an “illness.” Among other things, his solutions include ridding ourselves of the IMD exclusion that prohibits the construction of longer term psychiatric institutions, largely shuttering SAMHSA, handcuffing Protection and Advocacy Groups to stop them from lobbying, better fund evidence based treatments, enact and use AOT, modify civil commitment, expand mental health courts, and create more hospital beds and housing.
If any of this sounds familiar, it is because much of what Jaffe suggests was included in the original drafts of Rep. Murphy’s Helping Families in Mental Health Crisis Act that was largely rewritten, homogenized and compromised as it passed through Congress so that it could become law.
For those who agree with Jaffe’s advocacy, his book will become a new mental health bible stuffed with supporting evidence. For those who disagree, it will be seen as a one-sided diatribe and call to arms to fight against what Jaffe sees as a much needed shift from fretting about civil rights, empowerment and “recovery” (that is defined so loosely that it often becomes meaningless) compared to a more scientific, medical model approach that includes easing civil commitment, implementing AOT and encouraging compliance with medication while opening up HIPAA so that he and others with adult loved ones can be included in making health care decisions regardless of the wishes of what psychiatrists or patients want.
The White House and Rep. Murphy are quarreling over who should become the first Assistant Secretary for mental health tasked with revamping SAMHSA. But regardless of the choice, I suspect that a copy of Jaffe’s book will find itself on the new appointee’s desk and many of his suggestions will find their way into SAMHSA as our government once again attempts to fix our insane system.
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