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Call to Action - July 4, 2016
The Murphy Bills
Supplemental Information - Details for the Talking Points
on Opposing HR 2646
The following provides details for the talking points in asking your representative in the House to oppose HR 2646. Additionally, these same points should be used in appealing to your senator keep S 2680 as it is and to reject changes that will come from the House.
- 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 issues. 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 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
HR 2646 continues to extend federal grants that would 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 in 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 (outpatient commitment in the community) 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, click on the following links:
www.ncmhr.org/downloads/NCMHR-Fact-Sheet-on-Involuntary-Outpatient-Commitment-4.3.14.pdf and https://realmhchange.org/2015/12/07/a-psychiatrist-opposes-h-r-2646-heres-why, and www.ncmhr.org/downloads/Involuntary-Outpatient-Commitment-citations-and-abstracts-April-2014%20NCMHR%20%204-16-2014.pdf.
- 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.
- HR 2646 uses “anosognosia” as a rationale to relax confidentiality issues and promote forced treatment.
(Link for pronunciation of anosognosia: https://www.youtube.com/watch?v=tVo2QZ29q_c")
Section 401 of the HR 2646 would establish a “Sense of Congress” using a definition of “anosognosia,” which 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 blatantly deceitful. There is no actual scientific evidence to support the existence of anosognosia in mental health populations.
HR 2646 uses anosognosia as a justification to study diminished privacy rights, and 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, as others do who have chronic health conditions. HR 2646 ignores this evidence, paving the way limiting the rights to privacy and to control one’s own care.
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 promoting 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: http://www.madinamerica.com/2012/08/anosognosia-how-conjecture-becomes-medical-fact, http://www.dsgonline.com/rtp/special.feature/2012/2012.02.12/SF.2012.02.12.html, and https://realmhchange.org/category/anosognosia.
- The bill is hostile to programs and concepts of recovery
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?
- 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.” ( http://lac.org/wp- content/uploads/2014/07/IMD_exclusion_fact_sheet.pdf ) 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.
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 hideous false choice. Why isn’t community care seen as a better option over all of the above? The message is one of deep disrespect and horrendous discrimination for people who need mental health services.
Other Comments:
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 the NRA and proponents of coerced MH treatment. 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 these links:
http://news.vanderbilt.edu/2014/12/mental-illness-wrong-scapegoat-shootings and
http://www.theatlantic.com/health/archive/2016/06/untangling-gun-violence-from-mental-illness/485906
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. 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. https://www.ada.gov/olmstead
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. http://www.tampabay.com/projects/2015/investigations/florida-mental-health-hospitals
The failure of deinstitutionalization
The Community Mental Health Act, passed by the 88th Congress, 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. 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 SPECIFICALLY with the policies of deinstitutionalization, have made significant discoveries about how to help people with mental health conditions. And, we have found that those 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, and more. We have found models from other countries that are highly successful, such as Open Dialogue. Housing First models show clearly that mandating “treatment” before housing is folly.
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As I’ve said before, 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.
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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