The Hall Of Shame: Who Is Failing the Severely Ill?

[Editor’s note: In a series of blogs on what he views as society’s “shameful neglect” of the severely mentally ill, Dr Frances calls out organizations that “should be advocating vigorously but have chosen to stay on the sidelines.”]

It is a lot easier and much more profitable for mental health organizations to serve the worried well than to treat the seriously ill. Naturally enough, health care professionals prefer to cherry pick for the less ill patients and tasks. They would much rather create a stigma brochure to distribute at PTA meetings than take on the difficult task of providing ongoing case management and ade-quate housing for the homeless and psychotic. They prefer to ignore the increased risk of violence by people with untreated serious mental illness for fear that admitting it will “stigmatize” the others.

The mental health industry works very hard to convince government to throw money at “mental health” problems that are very broadly and loosely defined, instead of having a clear focus on delivering basic services to the seriously ill.

Typically and not surprisingly, health care professionals are currently lobbying in Washington for a bill introduced by Rep Ron Barber (D, Arizona) that increases reimbursement rates for marriage counseling, but are opposing one introduced by Rep Tim Murphy (R, Pennsylvania) that would increase the availability of hospital beds for the most seriously ill.

I have nothing against marriage counseling, but it should not be diverting desperately needed funds away from programs for the severely ill-to help them get currently lacking access to treatment and decent housing.

Congress has largely ceded control of mental health policy to the advocates of the mental health industry. And the mental health industry mostly wants to do what is easiest and most profitable-not what is most urgently needed. Its selfish interests do not coincide with society’s responsibility to care adequately for its most vulnerable.

It is also much easier politically to argue that mental disorder afflicts a large portion (say 25%) of the population with milder problems than to fight for the much greater needs of the 5% who have really severe and incapacitating illness. The 25% (and their families) have more votes and are much more likely to vote-and they can be seen as “one of us.” The 5% constitute a small, very easily ignored, relatively unattractive, silent minority-embraced only by their families, abandoned by their natural advocates. The easier-to-help are benefitted at the expense of those who are much more in need of help.

DJ Jaffe is one of a small group of stalwart defenders of the 5% who otherwise lack voice and influence. . . . He is Executive Director of Mental Illness Policy Org (www.mentalillnesspolicy.org), a non-profit, non-partisan, science-based think-tank on serious mental illness.

Jaffe writes:

The bipartisan Helping Families in Mental Health Crisis Act (HR3717) has wide support among those who advocate for the 5% of the population with the most serious mental illnesses. But there are parts of the mental health industry that ignore the seriously ill. Over 500,000 of the most seriously ill are incarcerated or homeless, largely because the mental health industry focuses on all others.

Substance Abuse and Mental Health Services Administration: SAMHSA distributes over $400 million in mental health block grants to states and tells them how to spend it. But as Rep Tim Murphy noted, “SAMHSA has not made the treatment of the seriously mentally ill a priority. . . . It’s as if SAMHSA doesn’t believe serious mental illness exists.” SAMHSA encourages states to spend block grants on the highest functioning. It wants to replace the scientific medical model with its internally invented recovery model, and creates its own “illnesses”-bullying and trauma being the most recent.

Consumer Groups: The National Coalition for Mental Health Recovery is the umbrella organization for SAMHSA-funded consumer groups such as the National Empowerment Center and National Mental Health Consumers’ Self-Help Clearinghouse. Rather than advocating for the seriously ill, they advocate for anyone with “lived experience.” They believe everyone should self-direct their own care, thereby ignoring those too sick to do so.

Mental Health Lawyers: The Bazelon Center for Mental Health Law, American Civil Liberties Union, the National Disability Rights Network, and State Disability Rights organizations not only ignore the most seriously ill, their actions cause harm. These non-profit law centers fight against assisted outpatient treatment and creation of hospital beds for the most seriously ill, thereby making incarceration inevitable for many.

Mental Health America: MHA is a trade association for service providers. Rather than helping those with serious mental illness, MHA is “dedicated to helping all Americans achieve wellness.” MHA of Essex County in New Jersey is one of the few chapters that does try to help the most seriously ill.

National Council for Community Behavioral Health: This organization represents behavioral health care conglomerates. They mainly lobby for funding Mental Health First Aid (MHFA) classes they sell. MHFA is based on the false premise that the mentally ill are so asymptomatic that special training is needed to identify them, and that once identified, they are referred to available services. MHFA is not proven to help the seriously mentally ill.

National Alliance on Mental Illness: Historically, NAMI did focus on serious mental illness because it was founded by families of the very seriously ill. In 1993, NAMI argued for parity for people with severe mental illness. In 1995, NAMI endorsed various forms of involuntary treatment when needed. Cut to today: Instead of the 14 million who are most seriously ill, NAMI National now claims to represent 60 million people with any mental health issue. Some brave state and local chapters, such as NAMI New York State, have refused to follow NAMI National’s lead and instead still focus on helping people with serious mental illness.

American Psychiatric Association: The APA represents psychiatrists and publishes the DSM. It is in the APA’s interest to have everyday problems declared a disorder so members can be reimbursed for treating them. A subset of psychiatrists do treat the seriously ill, and immediate Past President Dr Jeffrey A. Lieberman has gone out of his way to increase the visibility of serious mental illness, but such illness is still only a small part of the APA’s focus.

American Psychological Association: This group represents “130,000 researchers, educators, clinicians, consultants, and students.” The most popular subjects for their members are addiction, bullying, marriage and divorce, personality, sexual abuse, and depression-not serious mental illness.

Celebrity-Centric Advocacy Organizations: None of the 29 events sponsored by The Rosalynn Carter Symposium on Mental Health Policy focused on serious mental illness. Patrick Kennedy’s One Mind for Research is primarily involved in PTSD, traumatic brain injury, and stigma education, not schizophrenia and bipolar. He has used The Kennedy Forum on Mental Health to call for an end to the Institutions of Mental Disease Exclusion, but has not spoken out on important initiatives such as implementing assisted outpatient treatment and has not criticized the community mental health centers created by his uncle for refusing to serve the most seriously ill.

Law Enforcement: Ironically, this is the one bright spot: Law enforcement organizations, such as the National Sheriffs’ Association and the New York State Association of Chiefs of Police, have stepped in to fill the void left by the mental health industry’s abandonment of the most seriously ill. They’ve become powerful advocates for increasing hospital beds for the seriously ill and are working to force the mental health system to stop ignoring them. Law enforcement is vigorously supporting Rep Tim Murphy’s Helping Families in Mental Health Crisis Act, and working with families of the seriously ill, helped it gain 95 co-sponsors from both parties. Those who want to help people with serious mental illness should ask their representative to support this bill.

Thanks, DJ. A sorry Hall of Shame indeed. If society is judged by how decently it treats its most vulnerable, the harshest judgment must fall on those few who should feel a specific mandate to defend the severely ill but fail to meet the responsibility. We are all complicit in the barbaric neglect of the severely ill, but most lamentable are the natural advocates who haven’t entered the fray.

And I would add one more name to DJ’s shame list. The NIMH devotes almost all of its enormous research budget to glamorous, but very long shot, biological research that over the past 4 decades has contributed exactly nothing to the treatment and lives of the severely ill. Surely, biological progress will eventually be made, but at best it will take decades to have any impact on the current real-world problems of the mentally ill.

The NIMH should strive for a more fairly balanced bio/psycho/social research portfolio that would deliver useful and practical findings to help those suffering now. Most obvious example-the NIMH should be funding research and model programs on how best to get mental patients out of their inappropriate prison bondage and into community treatment and housing. Not glamorous perhaps, but a sure bet to improve our people’s lives.

DJ Jaffe has provided a jolting “j’accuse”-a much-needed wake-up call. The question now is whether those sleeping on their watch are capable of being shamed into action.

This article was originally posted on 8/28/2014 and has since been updated.