What If the Mental Healthcare System is Not Just Broken?
By Catherine J Rippee-Hanson
Damaging, harmful, and negative beliefs that the seriously mentally ill were possessed, sinful, or lacking religion, reigned as truth up through the mid-18th century and shaped not only the “treatment” of SMI – but, led to the stigmatization of mental illness, with dehumanizing and degrading confinement of mentally ill individuals often without regard for their humanity.
Many patients in hospitals were treated by professional staff, which was considered the most effective way to care for the mentally ill, and institutionalization was welcomed by families and communities struggling to care for mentally ill relatives. But the state hospitals were often underfunded and understaffed, and the institutional care system drew harsh criticism following some high-profile reports of poor living conditions and human rights violations in the 1950s.
Deinstitutionalization was meant to reform the “asylum-based” mental health care system and implement community-oriented care, believing patients would have a better quality of life. But with the closure of state psychiatric hospitals in the United States, the Community Mental Health Centers Act of 1963 came with strict standards passed so that only individuals “who posed an imminent danger to themselves or someone else” could be committed to state psychiatric hospitals.
That is still the standard today. A warped standard whereby the patient must state that they have intent to harm themselves or others. A “lack of insight” to their illness and no understanding of the ramifications of the right to a choice that many disability advocates fight so hard to protect on their behalf… so much so, that for the 50% of seriously mentally ill with anosognosia they really don’t have a choice or the ability to ask for help. They do not know that they need help. They are vulnerable... and as a society, we just gave up on them. We started a massive transition from institutional care to supposed community-based care without substantial funding and in many cases provide no care whatsoever unless the narrow and restrictive boxes for the criteria can be checked off in spite of anosognosia.
Solitude, poverty, poor living conditions, and physical health are prevalent among seriously and especially persistently mentally ill patients living in their communities and why family members and mental health advocates have pushed for legislative changes to the definition of "Gravely Disabled," under the law to include "medical necessity," especially when anosognosia is involved. Their living environment - an extension of their symptoms - that can equate to a "death sentence" - results from the stringent, binary protection of their civil liberties of choice... when they cannot realistically choose.
Many patients have been moved from inpatient hospitals to nursing or board & care homes which are often not staffed or equipped to meet the needs of the mentally ill - often with no mental health professional even on staff or consulting to the business/homeowner. The available options for housing are limited. The shift in the burden of care to the families of seriously mentally ill individuals, even though they often lack the financial resources or medical knowledge and experience to provide proper care - has contributed greatly to the crisis of serious mental illness and homelessness, as well as often costing the patient the supportive relationships with family members, while having an illness that takes a medical crisis into the depths of unreality, delusions, hallucinations, and florid psychosis.
Surely, we could do better now.
Incarceration has replaced treatment. Punishment for symptoms of brain disorders is still acceptable while others decry, the self-medicating, or not showing acceptance of help and cannot even understand the basis for the consequences of their decision-making, and then persecute them further by trying to "preserve their civil right to say no..."
Almost seventy-some years later, not much has changed for the SMI/SBD, so we are left with the high rates of incarceration among the mentally ill and a crisis where the seriously mentally ill are on the streets to fend for themselves or die. Professionals, families, and advocates for the mentally ill have called for more community treatment programs and increased availability of transitional and long-term psychiatric inpatient beds and care for patients in need of supervised treatment and housing or supervised living.
My brother, James Mark Rippee, devolving on the streets for 13 years because he has a serious mental illness with delusions and psychosis in addition to being blind. On this day he had just left a room someone was renting to him because he had a psychotic episode and attacked his friend with a metal pipe. He has anosognosia and does not believe that he is mentally ill.
The National Alliance for the Mentally Ill was founded in 1979 to provide “support, education, advocacy, and research services for people with serious psychiatric illnesses”. But for the most seriously mentally ill, especially those with anosognosia or "lack of insight" of their brain disorder or those who are floridly psychotic – they still stand at the back of the line for meaningful treatment or supervised housing. There seems to be a contradiction from civil liberties groups that demand the seriously mentally ill have their right to "die with their rights on" even if it is in the gutter. , the scariest conclusion is that the U.S. Mental Healthcare is not broken at all... perhaps it works exactly as it is meant to... our society now numbed after so many decades of calling for the need of mental health, but to punish and dehumanize those afflicted with the most severe, serious mental illnesses who are still perceived as being somehow to blame for their illness, demonic when left untreated, and monsters when their symptoms rage unchecked and someone else gets hurt.
By improving community-based programs such as Assisted Outpatient Treatment (AOT) and expanding psychiatric inpatient care - severely mentally ill patients in the United States will achieve improved treatment outcomes, increased access to mental health care, and better quality of life. For some, this is what they need for their life to be stable. For others - much more is needed.
So, are we moving in the right direction? Or are we still trying to jam a square peg into a round hole by referring to the symptoms of serious mental illness caused by a brain disorder in the realm of “behavioral health” as if delusions and psychosis can be trained out of an afflicted person? Seems almost like its meant to fail the patient. And why would we want a system that does that? Because it is cost-effective. Except, of course, when it isn't. Then, it's a tragedy... And, we can still blame the family or the afflicted individual for a brain illness and any consequences that occur because they did not receive any help.
How much different are we after all these decades from thinking of the patient as demonic or possessed? Or deserving of punishment for the sin of being ill? There is no reasoning with an unreasonable mind. When we are talking about the most seriously mentally ill or those with brain disorders like Schizophrenia, Bipolar Disorder, or Schizoaffective w/ Bipolar or Major Depression with Psychosis and possibly Anosognosia – we still criminalize, demean, and punish and neglect the needs of the patient effectively making them a "throw-away" segment of our population of no consequence.
This is not a "broken” mental healthcare system. A broken system implies that at some point it did indeed work or was "whole," and that somehow, someway it can be patched or repaired. It is not that there are too many "cracks" through which some small number of SMI may fall... We need to re-imagine and build a new system for the SMI/SBD that is inclusionary of the family members. What we have - is a completely splintered and fragmented system for the most seriously mentally ill with brain disorders in the United States of America.
We need to stop numbing acceptance of the status quo and demand that our lawmakers finish what was started in the 1950s. One aspect of the community-based treatment that is still missing is needed beds and community-based supervised housing with medical professionals. In hand with that is the need for the end of the IMD Exclusion, HIPAA reform for those with severe mental illness so that families can have input and receive information, LPS Conservatorship Reform to make it applicable to those with anosognosia and re-defining of the term, “Gravely disabled” to include medical necessity and a more sensible and consistent approach to the standard of determining what constitutes a danger to oneself or others.
Asked how many times and how many ways we can make lawmakers and others understand that the system is broken and shattered…and as the rallying cry of “we can do better” is heard - I say… as many times as it takes - and scream louder!
I have likened it to dropping a glass that shatters on my kitchen floor. I have to keep picking up the shards and slivers until they are all picked up or eventually I will still get cut and bleed. We are better than this! We must do better! Because there is no system but one of neglect - when 50% of the seriously mentally ill with brain disorders needs are just ignored. We owe it to those who need help – both the patient and their family.