Remembering Mental Illness Awareness Week on Mental Health Awareness Month

Dear friends and colleagues,

Families, judges, attorneys, law enforcement and providers are increasingly frustrated by barriers that impede their ability to provide loved-ones, clients, residents and patients adequate psychiatric treatment and care. Despite increased resources for mental health care, resources for people with untreated and under-treated serious mental illnesses (SMI) continue to atrophy due to decades long reductions in longterm intensive support programs and services. This trend has resulted in systemic failures that can be measured in terms of numbers incarcerated, homeless and dead. 

Part of the issue is that we do a poor job of delineating between mental health and mental illness. 100% of people have mental health issues but only 4% have severe mental illnesses. In other words, people with SMI often have mental health problems, but people with mental health problems likely do not suffer with SMI. 

As well, “Behavioral” Health is a misnomer. It promotes the idea that “behavior” is not a symptom of more complicated neurobiology, but rather, something that people with cognitive impairments can control and are therefore responsible for. It fuels the mental illness to prison pipeline and this must stop. 

In this message, we wanted to bring your attention to some recent articles that caught our eye, but we begin with one by Dj Jaffe from 2012 on “Mental Illness Awareness Week” that is no longer celebrated. We hope you’ll find them informative. We have also included recommendations for decision makers below the fold on how to end the institutionalized neglect of SMI that often results in horrific and unspeakable tragedies.

Turning around the shameful history of how we treat people living with serious mental illnesses, co-occuring substance use disorders and co-morbidities is long overdue. Solutions are complex but not complicated. Let’s not let one more day go by where we leave the seriously mentally ill behind. The clarion call is to break continuity with the past if we are to change the story for our communities. 

Mental Illness Awareness Week Is Nothing to Celebrate — In Fact, It Doesn’t Even Exist
“Everything is fair game for funding if it can be even tangentially connected to mental anything. Funding goes to the “worried-well” leaving the seriously ill to fend for themselves. The government can even divert their money to funding, say, PSAs that say, “the mentally ill are just like you and me”.

Diverting attention from the severely mentally ill also diverts the public from addressing the policy initiatives that can help the seriously ill: like ending health care discrimination and government discrimination against the seriously mentally ill, saving state hospitals, and finding a cure. It leads to reports by the Surgeon General and President’s Commission on mental “health” that virtually ignore the mentally “ill”.

Dr. E. Fuller Torrey of the Treatment Advocacy Center, and the nations leading mental illness researcher and advocate has a solution. He suggests that any government mental health program that doesn’t use at least 50% of the money for the seriously mentally ill should lose it’s funding. My own solution is a federal definition of “serious mental illness” that would force federal programs purporting to serve the seriously mentally ill population to serve that population instead of serving people “just like you and me”.

How bad is it? Mental Illness Awareness Week does not even officially exist anymore. Congress first declared it in 1989 at the strong urging of the National Alliance on Mental Illness, which still celebrates it. (Who needs Congress anyway?) It was re-enacted in 1990, 1991, 1992 and 1993. But since then, no one in Congress has had enough interest in the seriously mentally ill to keep it going.

However even though Mental Illness Awareness Week bit the official dust, stigma groupies will be happy to know Mental Health Awareness Month (May) is coming on strong.

So here’s an idea. This week, while everyone else is celebrating the non-existent MIAW by working to divert your attention to the “worried-well”, let’s think what we can do for those so seriously ill, so imprisoned, impoverished and punished by their psychosis, they are not at all “like you and me”–the 150,000 mentally who are homeless, the 231,000 who are incarcerated due to acting out when untreated, the 5,000 who took their lives this past year, the 70,000 in state psychiatric hospitals, and the 28% who get food from garbage cans. They don’t deserve to be ignored. Least of all by those who say they want to help.”

There have been some changes since the article above was written. Notably, waivers for states that loosen restrictions on federal Medicaid reimbursements to increase psychiatric bed capacity, new investments in Assisted Outpatient Treatment and Assertive Community Treatment, and bipartisan discussions fostered by the White House last December. Yet unless these programs and services are implemented, the vast chasm of complex problems that beset Americans with mental diseases will only get wider.

1989 is a significant date. In doing some research to find information about whether or not New Orleans ever engaged in the practice of chaining incarcerated people living with serious mental illnesses to metal steam grates (turns out we did) we found that apparently it was a trend. See this Chicago Tribune article from March 26, 1989 titled: “From Straitjackets to Steam Grates and a Right to be Insane“. Sadly, though metal grates are a thing of the past, the slow tortuous death in the criminal justice system as a panacea to brain disease is just as true today as it was then.

Pull quotes:
“His case is not a lesson about the dangerousness of insane people, but about the dangerousness of sane ones. It was they – or rather we – who created our bizarre policies on mental illness which manage to provide the minimum care for those who need it at the maximum cost to those who don’t.”—“One of the most durable myths about the homeless is that there is nothing wrong with them that cheap apartments wouldn’t fix. The shortage of low-cost housing is a big part of the problem. But many of the homeless are people who would have trouble keeping a roof over their heads if you gave them a mansion on Rodeo Drive.”

More articles below

Is a Mental-Health Crisis Looming?By Sally Satel, M.D., a resident scholar at the American Enterprise Institute and a visiting professor of psychiatry at Columbia University’s Irving Medical Center.

“This is a terrible time for many Americans. But the extent and depth of despair — and the power to contain it — depend less on the ministrations of therapists and psychiatrists and more on the rest of us. It depends on governments to keep the financial lifeblood circulating and on neighbors and communities to keep the civic fabric strong. The more we medicalize normal and temporary reactions to a crisis and outsource its management to professionals, the more we risk diluting the felt obligations of those sheltering institutions.”

The State of Serious Mental Illness in the U.S. Has Always Been a Dangerous Crisis By JOHN SNOOK (Executive Director of the Treatment Advocacy Center, a nonprofit that works to eliminate barriers to treatment for people with severe mental illness.) &KENNETH PAUL ROSENBERG, M.D. (director of the PBS film “Bedlam.” Dr. Rosenberg is also the author of the Penguin Random House book “Bedlam,” and a psychiatrist at Weill Cornell Medical Center.)

“Prior to the onset of the pandemic, the federal government had already begun efforts to restore bed capacity through initiatives such as overriding the discriminatory Institutions of Mental Disease (IMD) exclusion (a holdover of deinstitutionalization) that prohibits federal payments to hospitals containing more than 16 psychiatric beds. Jails have no similar limits on bed capacity. The law is strikingly anachronistic in an age when cities like Los Angeles had approved plans to build a jail with upwards of 3,800 beds for people with mental illness.”

COVID-19 and Advocacy—The Good and the UnacceptableBy Jeffery Geller, M.D., M.P.H. – President, APA

“The Unacceptable 

There is one facet of advocacy that APA must vigorously oppose and invite other professional organizations to join us in doing so: Recommended responses to the current pandemic should not be used as a subterfuge to advance an organization’s long-standing agenda of downsizing or closing public hospitals under the misinformed view that (1) every person with a psychiatric disorder can be treated without any degree of coercion and (2) the psychiatric inpatient setting is not the most integrated setting appropriate for anybody. 

Advocacy organizations calling for the wholesale discharge of patients, even with new funding (which isn’t going to happen when states are cutting budgets), still haven’t learned the harmful consequences of discharging patients who still require hospitalization. National advocacy organizations are apparently so far removed from contemporary community practices that the services they say will meet the needs of discharged patients are not functioning in any way that would allow them to take on new referrals. It’s unfortunate that these advocacy groups have yet to learn it takes more than good will and money.”

A Pop-Psychology Pandemic Mental-health advocates are more focused on the normal stress and anxiety caused by the coronavirus than with improving care for those who need it most.
By DJ Jaffe, author of Insane Consequences: How the Mental Health Industry Fails the Mentally Ill, executive director of Mental Illness Policy Org., and an adjunct fellow at Manhattan Institute.

“But pop psychology catastrophizes normality, positions it as a “crisis,” rebrands it as “psychological trauma,” and lends it gravitas that it doesn’t deserve. This response diverts our attention—and mental-health dollars—from the real crisis: the abandonment of people with serious mental illnesses, such as schizophrenia and bipolar disorder, who are forced to sleep on streets, in jails, and in the few remaining psychiatric institutions. Leaving these people untreated only worsens the spread of Covid-19.”

Housing That Heals: A Search for a Place Like Home for Families Like Ours 
White Paper by Teresa Pasquini and Lauren Rettagliata

“Our families expect the State to build a shared agenda and co-create a clear, collective action plan in 2020. While the current efforts in Sacramento are attempting to course correct, we must do better than aim in 2020; we need to hit the target. We believe that our research, reflections, and recommendations will help the State move beyond a fail first, housing first mentality that currently exists in the third world reality found in our cities, counties, and communities. We know we can do better and must do better in this first world country of ours. California cannot afford to wait any longer.”

And from the archives:

After the Asylum: How America’s Trying to Fix Its Broken Mental Health System.
Patients with mental illness are being detained in emergency rooms, often for weeks at a time. Now some states are rethinking the entire psychiatric care system. J.B. WOGAN   |   DECEMBER 2015

“The bed shortage is also the result of a provision in the 1965 federal Medicaid law that allows Medicaid reimbursements for psychiatric care only in small facilities. Up until that law took effect, states bore the responsibility of paying for psychiatric care, usually offered at large public mental hospitals. But those hospitals had earned a negative reputation as poorly maintained warehouses that made patients worse. So the law excluded psychiatric hospitals with more than 16 beds. The expectation was that smaller community-based facilities would take over much of the job of mental health treatment, and that these would be able to tap into Medicaid funding. 

The exclusion of funds for large mental institutions was a political victory for a bipartisan coalition of fiscal conservatives who wanted to cut mental health spending and liberals who saw state hospitals as sites of human rights abuses. But the exclusion had an unintended consequence. For the first time, states could collect partial reimbursements from the federal government for psychiatric care as long as they shifted treatment away from the old public mental hospitals. What followed was the natural consequence of that financial incentive: a national movement not just to de-emphasize large state psychiatric hospitals but to close them altogether, a process better known today as deinstitutionalization.”

Policy Recommendations for Leaders:

• Measure and Report on Meaningful Metrics.
  • Require health directors to annually report the number or rates of homelessness, arrest, incarceration, violence, needless hospitalization of adults with serious mental illness and homeless deaths. (Require an analysis of deaths, don’t just count them). Those are the most important metrics and the ones they should be evaluated on. By requiring them to report on those metrics you will be encouraging them to reduce them.
    
    
• Formalize a working group that focuses only on issues related to serious mental illnesses. Include Criminal Justice and Behavioral Health leaders to develop Mental Illness Policies
  • include mental health officials and those who run hospitals and forensic programs, not just community programs. They have SMI expertise.
  • Empower the working group to receive HUD CoC information on untreated SMI from Unity of Greater New Orleans.
    
• Refocus Existing Systems
  • If there is enough money to fund services for the seriously ill, then cuts are not needed. If cuts are needed, ameliorate opposition by asking mental health organizations currently funded to present new proposals which reduce the metrics above.

• Prevention and education programs
  • Move social services that are masquerading as MH programs to proper departments. These include jobs programs to jobs, tutoring to education, marriage counseling, anti-poverty, etc.
  • Ensure funds that are being distributed based on identities (race, gender identification, age, etc.) are serving seriously mentally ill within those subpopulations rather than going to community centers to improve generic mental wellness that should be covered by other social services departments.
  • Define Anosognosia
    
    
• Put resources against highest the risk populations.
  • Evaluate all inmates who received mental health services while incarcerated prior to release, to see what services are needed in the community including Assisted Outpatient Treatment if appropriate
  • Evaluate all those who are being released from involuntary commitment, or have had multiple hospitalizations to determine what services, including possibly Assisted Outpatient Treatment, is needed.
    
    
• Robustly implement Assisted Outpatient Treatment (AOT) (See data on success of AOT)
  • Put AOT evaluators in jails, prisons, hospitals and shelters.
  • Train mental health hotline operators, hospitals, mental health program employees, prosecutors, judges and public defenders about AOT and how to get someone in it.
  • Provide families pro-forma forms to get loved ones into AOT
  • Hire or allocate assertive community treatment (ACT) teams to AOT
    
    
• Create Housing for the Most Seriously Ill
  • Bring back group homes and S.R.Os, both of which had on-site 24/7 support (not just housing vouchers)
  • Allocate large percentage of any new housing to SMI, specifically to mental health courts and AOT (it saves money).
    
    
• Support and expand programs that do focus on seriously mentally ill
  • Support and expand Clubhouse programs
  • Support and expand Assertive Community Treatment Teams, mobile case managers
  • Hire/create more forensic assertive community treatment teams (FACT)
  • Prioritize programs with strong independent evidence they improve meaningful metrics (ex. homelessness, arrest, incarceration, hospitalization, suicide) in adults with serious mental illness.
    
    
• Give Crisis Intervention and Outreach Teams priority access to existing services
  • Hire gap navigators to help SMI over the crack between hospitals/jails and community care
  • Urge state to enact a ‘psychiatric deterioration” as a 4th criteria for state civil commitment.
    
    
• Preserve Hospitals:
  • Make access to city hospitals easier for the most seriously ill.
  • Encourage hospitals to use long-acting (3-month) injectables, ECT, and clozapine
  • Make greater use of Conditional Discharge from hospital
  • Have city council request state apply for Medicaid IMD waiver
    
    
• Use Bully Pulpit to communicate anosognosia creates cognitive barriers to voluntary access to services, civil commitment saves lives, lack of services (not stigma) is biggest barrier to care, violence by untreated SMI is legitimate area of concern, suicide is disproportionately in adults, and SMI can’t be prevented. Do not romanticize, trivialize or normalize serious mental illness.