Morning Zen Guest Blog Post ~ Val Marsh, MSW ~
This coming Wednesday, two days after the 4th of July celebration of our country’s declaration of freedom from oppression, the U.S. House of Representatives will vote on HR 2646, the Helping Families in Mental Health Crisis Act of 2016, or HR 2646. It is also known as The Murphy Bill. The ORIGINAL Murphy Bill. In truth, it has nothing to do with freedom, and everything to do with oppression.
HR 2646 is a heinous piece of legislation that has been hailed as the solution to the nation’s problems with gun violence, terrorism, and the massive influx of people with mental health conditions into the correctional system and the burgeoning ranks among the homeless. Not to mention that it will save untold hundreds of thousands of families from anguish and unwarranted pain. And it is a calculated, repulsive lie.
The National Coalition for Mental Health Recovery is calling upon all people of like minds, who care about individuals who need mental health services, to ACT. It is urgent. Please call your representative in the House of Representatives to vigorously oppose HR 2646 on Tuesday, July 5, 2016. And, call your Senator to insist that the Senate reject any amendments or changes to mental health legislation from the House by Friday, July 8, 2016. For more information about this Call to Action, please click here.
We have been fighting battles on many fronts for decades. The medical model of MH care has had the financial backing and the political power to convince the public and our Congress that people with mental health conditions must be coerced into taking psychotropic medication and into psychiatric care, for everyone else’s sake. Here is a rebuttal:
Nothing about Us without Us
HR 2646 describes the membership and duties of the following entities:
- The National Mental Health Policy Laboratory
- The Center for Behavioral Health Statistics and Quality
- Advisory Councils
- Peer review groups that review grants, cooperative agreements or contracts related to mental illness treatment
None of these entities includes the membership of people with lived experience with mental health conditions. We have been excluded from entities that will make important decisions about our lives.
Additionally, we are grossly underrepresented on the “Interagency Serious Mental Illness Coordinating Committee,” with only two representatives on a committee of more than twenty people.
We were thrown the proverbial bone with the following two inserts: “…increase meaningful participation of individuals with mental illness in programs and activities of the Administration,’’ and ‘‘…through policies and programs that reduce risk and promote resiliency.” Yet in the context of the bill’s relentless drive to replace recovery with the medical model of treatment and promote coercion, these two phrases have little meaning.
We are the citizens most directly impacted by the policies enacted in Congress. We bear the brunt of all things that go wrong with those policies. We are uniquely qualified to provide meaningful input, and we speak with the benefit of hindsight based on our actual lived experience. Any social policies developed without significant input from people with lived experience defy the basic tenets of democracy.
The Bill Expands Grant Funding and the Timeframes for Assisted Outpatient Treatment
Robert Bernstein, executive director for the Judge David L. Bazelon Center for Mental Health Law, provided testimony to Congress regarding Assisted Outpatient Treatment (AOT) several years ago, which began with the following: “The term ‘assisted outpatient treatment’ (AOT) is like calling robbery ‘assisted wealth redistribution’ and is more appropriately called involuntary outpatient treatment.” Indeed, the term robs the layperson of reality before the description of this abrogation of rights even begins.
HR 2646 extends and enhances existing federal grants that encourage states to expand coercive, court-ordered outpatient treatment programs. These programs of forced treatment do not help people get better. Further, AOT inserts the court system into decisions that should be between individuals and their treatment providers, while adding unnecessary costs. Ultimately, AOT discourages people from voluntarily seeking help using services that work for them.
It is unacceptable to fund AOT when humane, voluntary services have not been adequately funded for the past five decades. It is a waste of taxpayer dollars and it unfairly jeopardizes civil liberties. For more information, download the NCMHR Fact Sheet on Involuntary Commitment and Real Mental Health Change's "A Psychiatrist Opposes HR 2646, Here's Why."
HR 2646 Significantly Weakens the Substance Abuse and Mental Health Services Administration
HR 2646 provides a blueprint for the systematic disempowering of the Substance Abuse and Mental Health Services Administration (SAMHSA). The bill creates the new position of Assistant Secretary for Mental Health and Substance Use, which requires either an MD or a PhD in psychology. The insertion of medical authority over SAMHSA would be a huge step backward to institutional policies and models.
One of SAMHSA’s greatest achievements is its instrumental role in promoting recovery in ways that have helped thousands people across the country. SAMHSA has promoted and funded major innovations such as peer support, trauma-informed care, recovery oriented systems of care, and state consumer and family networks, all of which have yielded positive outcomes while being extremely cost-effective. These programs would be jeopardized by HR 2646.
Representative Murphy’s continued focus on disempowering SAMHSA is deeply troubling. Though HR 2646 may have been penned by Representative Murphy, it is clearly the bidding of Dr. E. Fuller Torrey, a longtime proponent of involuntary inpatient commitment, outpatient commitment and forced medication. Despite the criticisms of Rep. Murphy and Dr. Torrey that SAMHSA promotes activities that are not evidence-based, SAMHSA has published on its website a compilation of no fewer than 31 resources and links to evidence-based programs and practices.
HR 2646 punishes SAMHSA for partnering with and respecting the dignity of people with lived experience. We reject this attempt to undermine the very entity within the federal government that has provided leadership in actualizing the most fundamental, core belief of mental health consumers – recovery.
HR 2646 uses “anosognosia” as a rationale to relax confidentiality issues and promote forced treatment
To be honest, this issue IS A DRAG. I have received a great deal of pushback on this, because anosognosia is impossible to pronounce, much less explain. But it is vital. Please, push through your revulsion, for the sake of untold thousands of others who need you. Make yourself understand this important piece of information.
Section 401 of the HR 2646 would establish a “Sense of Congress” using a definition of anosognosia to study how best to wiggle around HIPAA in order to violate the confidentiality of people with mental health conditions. It is described as a condition in which individuals “lack the awareness they even have a mental illness.” Anosognosia can be found in the literature associated with people who have had strokes and brain injuries. It basically describes a condition in which a person is unaware that they have paralysis in parts of their body. It is a TEMPORARY condition, and it clears up without the use of medication. Further, according to Dr. Danica Mijovic-Prelec, a researcher in neuroscience, "patients with anosognosia, or denial of illness, are [still] able to process information about their condition."
Anosognosia is highly controversial because it was “borrowed” into the MH field specifically to justify forced treatment. But how can the above condition described for stroke patients be remotely the same for individuals with mental health conditions? The “science” is a sham. Can neuroscientists attest to this application to people with “mental illness”? No. There is no actual scientific evidence to support the existence of anosognosia in mental health populations. But Congress is not comprised of experts in research. And they have been convinced to rely on phony research by experts in public relations, not science.
HR 2646 suggests that people with mental health conditions have worse “compliance with treatment” than others. In fact, there is substantial research showing that people diagnosed with mental illness are able to make reasonable decisions about their care, on par with others who have chronic health conditions.
Allowing such language into a “Sense of Congress” legitimizes junk science and provides a rationale for violating confidentiality and the deprivation of civil rights. It also sets a dangerous precedent for future legislation that will promote forced treatment measures. This must be struck from the bill.
For more information about anosognosia and people who appear to lack insight, please click on the following links: Anosognosia: How Conjecture Becomes Medical “Fact”, "The Issue of Insight", and Call to Action: HR 2646 Markup This Week
The Bill is Hostile to Programs and Concepts of Recovery
In writing and promoting this bill, Representative Murphy has relied heavily upon the work of Dr. Torrey. HR 2646 is steeped in language that attempts to justify coercion and the stripping of rights of people with mental health conditions. Over the course of the past four decades, Dr. Torrey has established a reputation as an extremist and an ideologue. He does not believe in recovery. He wants Congress to believe that people who “deserve” mental health services are “too sick to know they are sick…” and those who do not exhibit the most severe behaviors associated with “illness” are a waste of money. It is a warped, binary vision bereft of hope – those who need to be coerced, and those who neither deserve help nor a place at the table of policy decisions.
There is no support for recovery-based programs in HR 2646. It is strikingly absent from the bill. In fact, the bill calls for the “DIRECTOR OF THE CENTER FOR SUBSTANCE ABUSE TREATMENT … [to] work with States, providers, and individuals in recovery, and their families, to promote the expansion of recovery support services and systems of care oriented towards recovery.”
There is no similar language for mental health. We must ask why the principle of recovery in mental health is not supported in HR 2646, especially in light of unfettered support for recovery among individuals with substance use disorders.
Why is it impossible to believe that people can actually get better? A better question would be to ask why our members of Congress have bought this ugly deception.
Inpatient care cannot and should not replace preventive care in the community
We do not support the expansion of Medicaid funding for Institutions for Mental Diseases (IMDs) or other inpatient settings. This is often referred to as “loosening the IMD exclusion.” Increased funds for hospital care means continuing to support the unacceptable status quo, and advances the agenda of forced treatment in the absence of decent voluntary care.
The current lack of adequate community support has created a mental health system that is crisis-driven. It provides too few services that are too late and that result in unnecessary and coercive means of treatment. In addition to causing needless suffering, continued/increased funding for inpatient settings ultimately supports the most expensive form of care possible at the far end of the continuum of care. The inevitable result is rationing. Thus the cycle of crises continues unabated. It is the equivalent of offering intensive care as the sole treatment of choice for people with heart conditions.
Since the 1990’s, state after state has attempted to close psychiatric hospital beds and “reinvest” the funding into community care. And yet, once the funds were transferred to the community, they became vulnerable to funding cuts, especially in the face of economic downturns. We have lost more than $4 billion alone to the Great Recession of 2008. OF COURSE PEOPLE HAVE GONE INTO CRISIS. It is outrageous that we have an entire nation that blames the victims of such shameless public policy with more of the same.
The mental health crisis that the United States is currently experiencing is directly related to a collective lack of will to fund and sustain decent community care, at both the state and federal levels. Beds were closed, yet hospitals remained open for business as usual for decades. Later on, beds were closed with tremendous efforts among advocates to create community care, yet the money evaporated with each economic downturn.
There is no right to community care. There is only a “right” to “treatment” once you have lost your liberty. Who is not thinking clearly here?
Critics argue that too many beds were closed, that inpatient care will always be needed, that HR 2646 is merely codifying recent regulatory changes made by CMS, and that we must address this urgent crisis now. But in relaxing the IMD exclusion to allow for 15 days each month of inpatient care, we will lose vital dollars that we will never get back for community care. Never. The proposed federal funding for IMDs is “de facto” replacement money for lost state dollars that will be relocated to the wrong end of the system.
One consistent theme of our opponents is that psychiatric hospitals are better than jails, prisons or the streets. This is a false choice that should be revolting to millions of us throughout the country. Why isn’t community care seen as a better option over all of the above? The message is one of deep disrespect and discrimination for people who need mental health services. People of good conscience have been misled. Those who have misled them have a mighty war chest and wear a deceptive mantle of “truth-i-ness,” as Stephen Colbert might have said.
Conflating gun violence with mental health conditions
HR 2646 is a direct result of the Sandy Hook tragedy. It was a tragedy so horrendous that the entire nation was traumatized… except, of course, for the NRA and the proponents of coerced MH treatment, who were gleeful to find an opportunity to spread their poison. Since that horrible day, and with each subsequent mass shooting, people have struggled to find an answer; something, ANYthing that will keep us, especially our children, safe.
Despite research that consistently shows that only 4% of all violence in this country is related to mental illness, people with mental health conditions have been scapegoated. The truth is merely a distraction. Japanese Americans were interned during WWII because the government and the public KNEW they were a dangerous population. We now know better. But in the frenzy to react to tragedies of historic magnitude, it is easy and predictable that vulnerable people will be blamed and have their rights violated. The Japanese Americans were ultimately freed. Can we say the same about people who will be forced into hospitals? For more information about violence and mental illness, click on Mental Illness is the Wrong Scapegoat After Mass Shootings and Untangling Gun Violence from Mental Illness.
The Myth of Hospitals Being the Answer
Deinstitutionalization came to pass, in part, with the sobering recognition of a national shame. Psychiatric hospitals are inherently coercive. Period. Conditions in psychiatric hospitals easily devolve into egregious snake pits. It is as true today as it was in the 1950’s. Erving Gottman wrote a seminal book about conditions in psychiatric hospitals, entitled Asylums: Essays on the Social Situation of Mental Patients and Other Inmates.
The Department of Justice is still investigating hospitals and legal action is still needed too often to remedy abuse, neglect and unnatural deaths. Additionally, increasing hospital beds flies in the face of the The Supreme Court’s Olmstead decision. It is unwarranted segregation, not integration.
The following link to an investigation of a Florida hospital is merely one example of how sadistic and shocking inpatient hospitals can become. It is a damning statement of the medical model.
The Failure of Deinstitutionalization
Deinstitutionalization was passed into federal policy in 1963, at a time when the United States was the Land of Camelot. This landmark legislation was driven by the civil rights movement, the advent of psychotropic medication, which was thought to be the magic bullet for treating mental illness, and the exposure of egregious conditions and the warehousing of hundreds of thousands of citizens. In 1961,
The Community Mental Health Act was passed by the 88th Congress. It was never adequately funded. This landmark legislation represented the beginning of deinstitutionalization. However, states saw it as an opportunity to close beds without having to relocate the funds in the community – quite a windfall for state budgets, for a period of time. In fact, over 90% of all state hospitals were closed as a result of deinstitutionalization.
This is the true crux of the problem we face with mental health care in the United States. It is not a problem of “undeserved” rights; it is a problem of inadequate resources that are poorly allocated. It is not only illogical and inhumane, but is also a very poor investment of public dollars. Hospitals represent the most expensive form of mental health care. It makes no sense to create a system around inpatient care.
We, the people with lived experiences that are SPECIFIC to the policies of deinstitutionalization, have made significant discoveries about how to help people with mental health conditions. And, we have found that those with lived experiences, much like those of people who have struggled with addictions, can have a profoundly positive impact upon people who need mental health supports. People who have been there understand what it is like for people who ARE there.
We have developed peer-run respites that help divert people in crisis from inpatient care. We have developed peer support specialists, forensic peer specialists, recovery coaches, self-education programs and more. We have found models that facilitate open communication among individuals, families and providers from other countries that are highly successful, such as Open Dialogue. Housing First models show clearly that mandating “treatment” before housing is folly.
These are troubling times for people with lived experience in mental health care. More than 50 years after deinstitutionalization, mental health systems across the country are still unable to provide the appropriate care in the community that was promised long ago. We must ask ourselves why this is so, and we come back to the fundamental issues of stigma and discrimination. We are different. Yes, we know. But does that justify withholding help in the face of massive suffering? Does it justify a punitive, coercive system of care that dictates without listening? Does it really justify violating the rights guaranteed to all citizens of the United States under our Constitution?
Time and again, research has proven that the public perception of the relative “dangerousness” of people with mental health conditions is unfounded. Sensationalized, distorted media coverage has fueled arguments for forced treatment and an overly medicalized system of care. The march toward re-institutionalization and coercive care is abhorrent to us. Having a mental health condition does not constitute a life sentence to poverty, marginalization, aberrant behavior or an inability to become a fully functioning citizen who can contribute meaningfully to his/her community. We know that recovery is possible because we are the evidence.
It has been 53 years since deinstitutionalization began. We are still waiting.
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Valerie L. Marsh, MSW, is Executive Director of the National Coalition for Mental Health Recovery (NCMHR). Marsh received both her bachelor’s and master’s degrees in social work from Virginia Commonwealth University in Richmond (VCU), Virginia, where her graduate studies focused on mental health policy, administration and planning. She served as an adjunct faculty member at VCU, teaching policy, advocacy and human behavior to graduate and undergraduate students in social work. As the Executive Director of NAMI-Virginia from 1994-2004, Marsh shown a spotlight on abuse, neglect, and unnatural deaths in Virginia’s public psychiatric hospitals.
This post originally appeared on the Mad in America website, July 5, 2016