“Of all the forms of inequality, injustice in health care is the most shocking and inhumane.” ― Martin Luther King Jr.
Zealous anti-Obamacare Republicans control Congress and President Elect Trump is still promising to make the repeal a top priority once sworn in, unlike some other campaign promises he has seemingly begun to back away from. In response, rallies were held across the country yesterday in defense of “health care for all.”
Another campaign on social media has generated numerous personal stories and pleas on how Obamacare (aka Affordable Care Act) has saved people’s lives by providing them with insurance coverage.
What’s missing, however, in these stories and discussion/debate about defending the ACA is recognition that there is still much that needs to be improved, particularly for the most vulnerable. As it is, there are around 30 million people still without insurance and too many, if not most, are underinsured. As a caretaker to someone who has a serious mental illness and various serious medical problems, I’ve seen firsthand how woefully inadequate our system still is. The question to me is: how do we defend the good things AND fight for more?
Some Egregious Problems
The expansion of Medicaid, at least in CA, has exacerbated the already high doctor to patient ratio. It took me weeks just to find a doctor when I moved my mom in with me. Dozens of providers told me they weren’t accepting anymore Medicaid patients (Medicaid is called “Medi-Cal” in CA.). When I finally found a doctor for my mom, the first available appointment was two months away. There are scattered reports that confirm this problem. And this says nothing about how difficult it is to get the doctor to respond to a phone call in a reasonable time period.
As I chronicled last January, my mom was blatantly abused and neglected by a hospital when she slipped into an acute psychotic episode. Against my wishes, as her next of kin, and despite her being in an obvious psychotic state (She didn’t even believe she was in a “real hospital.”), hospital supervisors let her sign herself out and staff wheeled her to a taxi cab. (Read the story here: Me vs. The Hospital) Understaffing is an issue. The hospital didn’t have a psychiatrist on duty at the time to do an assessment of my mom. But flagrant disregard for people with SMI and poor training are also to blame.
There is a severe shortage of psychiatric beds. In 1955, there was 1 psychiatric bed for every 300 Americans. In 2010, there was 1 psychiatric bed for every 7,100 Americas. In California, the situation is particularly stark. According to a 2012 report by the Treatment Advocacy Center, the state eliminated 16 percent of its beds between 2005 and 2010, leaving just 14.2 public psychiatric beds per 100,000 people – far below the 50-bed standard considered necessary to provide minimally adequate mental health treatment. In 25 counties in the state, there were no psychiatric beds at all. This leads to people in mental health crisis clogging up emergency rooms, and many more being warehoused in jails/prisons, which are the primary treatment centers in the country today. My mom hasn’t been successfully treated for her SMI, in large part, due to this gross shortage.
Even with insurance, the severely sick, disabled and poor are given death sentences. My mom’s physical health has deteriorated severely. She suffers from congestive heart disease, anemia, diabetes, high blood pressure and kidney problems. The lack of monitoring and coordination between her doctors is a disgrace. Her state is such that medicines are constantly being changed and she requires close and daily monitoring for any adverse changes in her condition. I shouldn’t have to go periods of weeks or months without talking with her doctors and/or receiving assistance. And without me for regular transportation to weekly doctor appointments, she’d probably already be dead.
She should be in some sort of assisted living facility. In the least, she should be receiving regular visits in the home from doctors, counselors and even clergy as part of a medical treatment team.
From my standpoint, we still need a drastic overhaul of our healthcare system. This includes a single-payer system that would help get healthcare costs under control and allow the government to use its leverage to negotiate reasonable prices for medications. It also includes prioritizing preventive care, adequate treatments and programs, including home visits by medical/treatment professionals, for people with substance abuse and/or mental illness, and adequate funding and staffing for hospitals. In the case of psychiatric hospitals/treatment centers, the repeal of the Institutes for Mental Disease (IMD) exclusion is an absolute necessity, in order to insure a substantial increase in funding for psychiatric hospitals.
The gains made to save and improve people’s lives under Obamacare obviously need to be defended, but not at the expense of ignoring the vast improvements that people deserve and still need to be made. Otherwise, too many are still condemned to misery and suffering.
Right now, Single Payer is a legitimate, possible alternative that would expand coverage and improve care immediately, while protecting the gains recently made with ACA. In the case of CA, Democrats have a super majority in the legislature. What a heck of a message it would send to Trump and company if CA used this opportunity to truly expand healthcare to all its residents by passing Single Payer. Check out more info. about the campaign here: https://healthycaliforniacampaign.org/
The end of the year holidays and winter cold were some of the hardest times for me and my family the last handful of years. My mom’s housing was unstable at best. The worst of it was punctuated by her being effectively homeless for two of those years. In that time period, very short housing stints aside, she primarily lived in a car.
I’d do my best to spend Christmas Day with her, regardless of her immediate living situation. I’d drive down to Bakersfield or Fresno from the Bay Area, put her up in a hotel room and take her to Marie Callender’s for a Christmas meal, her preferred choice. The following day, I’d usually take her shopping for some clothes and undergarments, if need be. She’d regularly have minimal clothing. Clothes that she’d buy or I’d buy for her would typically disappear within months. She’d claim people would steal them from her car or from the places she was living in. I figured that she probably threw them out, as she routinely did in the past, upon believing that the clothes would become contaminated with toxins or spoiled by evil spirits.
This is what the holidays were for me. There was no real respite or joy from my time off work. It was just a sad reminder of our inability to get any care or treatment for my mom’s serious mental illness. I was planning on doing similar last year for Christmas. I was mentally preparing myself for the trip to Bakersfield the next day, when my uncle called to tell me that my mom was in the hospital with respiratory problems.
I got what information I could out of him. He was always short on information, in his usual enabling fashion. He covered for my mom and had been showing signs of deteriorating mental health himself the last couple of years. Like my mom, he denied she even had a serious mental illness.
The attending nurse told me, unsurprisingly, that my mom’s glucose was high and that my uncle was stubbornly refusing her insulin. Both my mom and uncle believe that it’s a poison and dangerous for my mom. The nurse explained that her high glucose was exacerbating her lung infection. I told the nurse that I would be there the following day, on Christmas, and, as her next of kin, I wanted them to begin administering her insulin.
When I arrived the next afternoon, I wasn’t prepared to see my mom on a respirator and essentially lifeless. My heart sank and I could feel my blood pressure and temperature immediately rise. As soon as I could, I talked to the attending nurse about her status. The nurse, a different person than the one I talked to the day before, informed me that her glucose was over 700 and that my uncle was still denying her insulin! My mom’s glucose had reached the 500s various times in the past, but I didn’t even know glucose could get into the 700s. I was in disbelief and fumed with indignation towards my uncle.
Aside from mentioning my uncle was intimidating, the nurse had no real explanation as to why they weren’t treating my mom with insulin, after I told her that I requested it on the phone the day before. Nonetheless, I explained my mom’s psychiatric condition and history to her, and told her to start administrating insulin immediately. Despite wanting to put my uncle through a wall, I diplomatically suggested he go home and rest. Once he left, I told the hospital staff to tell hospital security that he was not allowed to see my mother.
My mother’s condition slowly improved, once they began administering insulin. Altogether, she would be in the hospital almost a week. As the initial few days hinted, though, the whole experience, from beginning to end, would be a proverbial nightmare. The hospital would ultimately discharge my mom unsafely and prematurely, against my wishes.
My mom would slip into an acute psychotic episode and begin refusing treatment. She would begin exclaiming maltreatment by the hospital staff and say she wasn’t even in a “real hospital.” At one point, she tried to get up and walk out, although she was too weak to walk and the urine catheter was still attached to her. The hospital would eventually take her out on a wheelchair to a waiting cab. This blog was initiated primarily by that experience. From January, the post about it can be found here: Me vs. the Hospital
I formally filed complaints with both the hospital and the California Department of Public Health (CDPH). Those complaints/investigations would prove unfruitful, however, just as I imagined they would. I’ve complained to the CDPH before about a different hospital. In that case, a hospital was trying to discharge my mom without considering the recommendation of her attending physician. The doctor wanted my mom to start taking insulin.
At the time, my mom was more amiable to the idea. Having cataracts, though, she was unable to administer the shots herself. I was lobbying the hospital to send my mom to an assisted living facility, where someone could administer her shots. The hospital was ready to discharge her without her insulin prescription, though. The hospital director was predictably none too happy that I had talked to the doctor at length about my mom’s care plan. Ultimately, the CDPH would find no violations in their investigation, even though it’s illegal for hospitals to discount/ignore doctor recommendations as part of their discharge plan.
This more recent investigation was an obvious joke from the start. The investigator took three months to contact me, from the time I filed my initial complaint. By then, I had already talked with one of the hospital administrators about some of the things that occurred there. I just mentioned my frustration with some of the staff’s insensitivity and the ignoring of my request over the telephone to administer my mom insulin. I didn’t want to tip her off to my complaint to the CDPH about the hospital discharge, so I didn’t mention it at all.
By the time the investigator contacted me, I was sure the hospital did what it had to do to cover its tracks. To top it off, the investigator sounded meek and unprepared for the job over the phone. She seem entirely disinterested in what I was divulging to her and didn’t once ask me to clarify or repeat anything I had said. I didn’t see how she could have been taking adequate notes.
By the time I was informed over the summer of the findings, a good six months after the incident, I wasn’t at all surprised that the investigator found no violations. Out of it all, I just received some assurance by the hospital administrator that she would work on some additional training for the staff and talk to the doctor about my concerns. Little consolation and just more proof to me that the health care system and government collude to provide inadequate and inhumane care for the people who need quality care the most.
Christmas is tomorrow and as tough as most of this past year has been living with my mom, I find some peace and consolation that she’s physically safe. In the least, I don’t have to spend any sleepless night worrying about where and how she is. It hit freezing temperatures
for the first time this winter this past week. Letters my mom would write to me exclaiming how cold it was living in the car and asking to live with me have given way to complaints that the house is too cold at 65 degrees. “We need to watch our heating bill.”, I’ve told my mom just about every day this week. “You haven’t thrown away your jacket, have you?” I said yesterday, jokingly. “If not, put it on.” The Christmas tree definitely brings her some solace, despite the ongoing “spiritual attacks.” It’s the first tree she has had in around ten years and her bedroom is more cozy and better decorated than mine. For me, my blood pressure is the best it has been in years. For these things, we are grateful.
In just the last month, I’ve had two friends ask me for advice on getting help/treatment for someone whom was experiencing a psychotic episode. In one of those instances, a friend’s loved one was hospitalized with potential liver failure, after consuming too much aspirin. Just trying to get basic information about what I could do to get help/treatment for my mom, when I first started trying to years ago, was one of my most frustrating and agonizing experiences.
A couple of counselors I paid to see were of little to no help whatsoever. It took phone calls to crisis hotlines and government agencies, and researching mental illness for me to start piecing together some sort of plan towards what I could do to try and get my mom effective treatment. My friends’ experiences convinced me to try and provide some information and a guideline on what to do when someone is experiencing a mental health crisis.
Disclaimer: I’m not a lawyer. My advice is mainly practical and based on vast experience with the current policies and practices of our MH system in California. Residents in others states should still find it helpful, though.
What Is Psychosis?
A MH crisis very well may occur without psychosis being present. I’m going to focus on situations with psychosis, though, since it’s what I’m most familiar with and what is the most frightening for all involved.
From the National Institute of Mental Health: “The word psychosis is used to describe conditions that affect the mind, where there has been some loss of contact with reality. During a period of psychosis, a person’s thoughts and perceptions are disturbed and the individual may have difficulty understanding what is real and what is not. Symptoms of psychosis include delusions (false beliefs) and hallucinations (seeing or hearing things that others do not see or hear).”
A very common delusion experienced by a person having a psychotic episode is the false belief that someone or something is trying to harm and/or kill them. Hallucinations can take various forms and, when experienced together with delusions, can cause immense distress and potential danger for the person in crisis and people around them. “Can’t you hear them? They’re outside the door! They want to get me! Why don’t you believe me?!” “Those people across the street work for the FBI and are spying on me because of what I know about the government’s plans! Do you work for the FBI too?!” Obviously, a person in such a state of mind should be considered extremely volatile and agitated.
Ideally, the onset of an acute psychotic episode can be discerned before it develops. Here are some warning signs to lookout for: http://www.nami.org/earlypsychosis For people with a known serious mental illness and history of psychotic episodes, predictors of imminent psychosis include substance abuse and ceasing medication and/or treatment.
Options for Voluntary and Involuntary Treatment and/or Commitment
Options available to you can vary considerably, depending on the state and/or county you reside in. Recent budget cuts and austerity politics have made an already inadequate MH system pretty pitiful. Nevertheless, it’s essential to know the options available to you, as if it’s one big strategy game, because it is.
Ideally, the person in a MH crisis will be willing to seek help and treatment. This can take the form of just taking the person to a hospital emergency room. Oftentimes, there are immediate medical/physical conditions that need to be stabilized and/or treated anyways, like diabetes or high blood pressure. Or, in more extreme cases, potential organ failure. As soon as possible upon admittance, let the attending staff know, ideally a supervisor, of the person’s MH condition.
If you know the person stopped taking medication for a known mental illness, obviously getting the person to take their psychiatric medication again should be part of the hospital treatment plan. In the event that there isn’t an official diagnosis, but a mental illness is suspected, request an evaluation from the hospital psychiatrist or a mental health clinician. Hospitals want to minimize their costs, especially in this day and age, so don’t be afraid to nudge them quite a bit to do this. Again, it’s all a big strategy game. They typically want to discharge the person as soon as possible, whereas you want them to stabilize and treat the person sufficiently. In the least, they should give information about what MH services are available at the hospital or the county. Ask to speak to the hospital social worker for this information. You may, also, try to get their assistance in finding housing, in the event that the person’s current housing is insecure or non-existent. From board and cares to assisted living situations, there could be options for you and him/her.
When a person is refusing to seek treatment during a MH crisis, an involuntary commitment or hospitalization will be the only recourse. Unfortunately, due to strict civil rights laws and lack of psychiatric hospital beds, it’s exceedingly difficult to do this. Even if you’re successful in getting the person admitted, it’s likely that the person will be released before they are effectively treated and/or stabilized. There are strategies that can and should be employed to increase the chances for commitment and treatment, however.
In the large majority of states, if not all, at the minimum, in order for someone to be involuntarily committed for a psychiatric hold, he/she needs to be a danger to oneself or other people. What constitutes being a danger to others is pretty straight forward. A person need to be a violent, physical threat. The chances of this occurring during a psychotic episode are good, especially in the case of someone having persecutory delusions and/or hallucinations. If a person believes someone is trying to hurt and/or kill them, they will understandably try to protect themselves. My small framed mom has hit me in such a state.
Being a danger to oneself means being suicidal, but it also can mean putting oneself in a dangerous situation. For example, a person wandering into a busy street or a diabetic not managing their diabetes properly. There’s some ambiguity here. If not sure, try to ask a county mental health professional before getting authorities involved.
When someone you care about is dealing with a MH crisis, nonetheless, it’s obviously important to make sure you are safe. Stay calm. Don’t argue with the person in crisis. Do your best to assure them they are OK. Keep a safe distance if the person is agitated and angry. As soon as you can, call 911. Make sure you explain to dispatch that it is a psychiatric emergency and request that officers trained in MH crisis interventions and assessments be sent over.
Understandably, many people are reluctant to call the police, due to fear of police brutality, potential racial bias, and the lack of adequate police training in MH crisis responses. An alternative is to call a field clinician team or mobile crisis team. There are many more counties that have police SWAT teams than there are those that have field clinician or mobile crisis teams, though. Call your county’s Behavioral or Mental Health Department, or their crisis hotline, to ask if a MH response team is available.
Be Prepared for a Potential Involuntary Commitment
With someone who has a known serious mental illness and/or a history of psychotic episodes, being prepared is essential. Be sure to do the following:
Prepare a document (a “medical/psychiatric information sheet or report”) that includes a list of medications, contact number, relevant legal information and of course any pertinent medical/psychiatric information, such as illnesses/diseases and formal diagnosis. Once hospitalized, the attending physician or staff may not have the time or be able to communicate with you regularly. And don’t assume the doctor or hospital/treatment center is able to access any medical information about the person, via a computer or database system. The document you provide them with, regardless, can provide them with valuable information and save them substantial time. Make sure to keep the document updated with changes.
Don’t be afraid to be assertive or play hardball. The laws around involuntarily hospitalizations are strict and there are various “checks and balances” once a person is admitted. People with serious mental illness are very good at telling police officers and clinicians what they want to hear when being questioned. Don’t be afraid to refute or counter what the person tells authorities. And don’t be afraid to tell the psychiatric staff that you don’t feel safe with the person returning home and that you will hold them legally liable, if anything harmful happens to the person if discharged without adequate treatment first.
The Health Insurance Portability and Accountability Act (HIPPA)
The privacy of an individual’s health information is protected by federal law. The strict interpretation of the law has led to objections by family members that it prevents them from knowing information that is relevant to the welfare of their loved one and safety of their home. There is usually more flexibility when a person’s judgment is grossly impaired, however. The doctor or staff can act in the “best interest” of the person, when their judgment is severely impaired, and give information to a family member and/or friend. I haven’t experienced any real problems getting information or talking to medical staff, when my mom has been involuntarily hospitalized. However, there are plenty of stories of family members being completely shutout, even when their loved one is cycling in and out of acute psychosis for extended periods of time. Get more information on HIPPA here: https://www.nami.org/About-NAMI/NAMI-News/Understanding-What-HIPAA-Means-for-Mental-Illness
Other Considerations and Options
Short of a MH crisis, if the person is willing to receive help and treatment, then there are other options available, such as county outpatient services. The different programs can vary in their level of involvement. People with a serious mental illness should qualify for “intensive services,” programs that involve a treatment team and assertive intervention that can include monitoring and home visitations.
More than 46 states have passed what’s commonly called Assisted Outpatient Treatment (AOT). AOT is court ordered outpatient treatment and specifically designed for people with serious mental illness who refuse MH treatment voluntarily.
Become an advocate for the person you know who suffers from a mental illness. Educate yourself as much as possible on mental illness, the various treatments and programs available, and the history and nature of our mental healthcare system (The National Alliance for Mental Illness offers education classes for family and friends.). As in the case of what I’ve had to do for my mom for just minimal support, emails and phone calls to and meetings with attorneys, journalists, politicians, along with complaints to state officials, all may need to become a regular part of your arsenal. Pushing for adequate mental healthcare reform is, also, a worthwhile and noble goal.
Most people’s minds, including my own, are on the elections. I’ve been thinking a bit about what the results mean for the future of mental healthcare reform. I’m reminded every day of the inhumane consequences created by my mom not having access to adequate psychiatric treatment. How could I not think about it?
Today, it was at a visit with the neurologist. My mom started crying during a memory test, because she couldn’t answer some of the questions. She doesn’t understand the nature or full extent of her health problems, but she knows she is being unjustly deprived of a better quality of life. So, despite whatever happens politically in our country, I’m in it for the long run. No person, no family, deserves to be so ignored, neglected and abused.
Slowly but surely, I’ve been gaining more attention to my blog and family’s story. Part of this has been done by contacting other bloggers, advocates and advocacy organizations. While I’ve gained support and interest through Facebook and Twitter, I’ve definitely garnered most of my attention through promotion at other blogs and, more recently, joining an actual campaign.
I was fortunate enough to have one of my blog posts promoted by well-known mental health advocate and writer Pete Earley. Pete has written a number of books, including two on mental illness. His book, Crazy: A Father’s Search Through America’s Mental Health Madness, is based on his own experience with trying to get psychiatric treatment for his son. I had actually read the book some years ago when I first started trying to get help for my mom. It truly is a fascinating read and remains one of the most valuable resources I’ve come across in learning what my family and I are up against. Pete was also very warm through our communication. He even sent me an autographed copy of his book Crazy. I’d encourage anyone interested in mental health reform to read the book and subscribe to his blog: http://www.peteearley.com/blog/
I also had a blog post promoted by the Treatment Advocacy Center, an organization that specifically focuses on the lack of treatment and programs for those with serious mental illness. More recently, they asked me if I’d participate in a campaign to raise awareness for the need for more psychiatric hospital beds. It wasn’t too difficult a decision for me. I had some concerns about what kind(s) of actual policies, if any, this may lead to them pushing for. I wouldn’t want my family’s story to be used for something I wouldn’t agree with. I figured I could always decide to stop participating, though, down the road if need be. The campaign #ABedInstead was launched last month and I’m happy to be a part of it: http://www.treatmentadvocacycenter.org/what-you-can-do/a-bed-instead
I was quite surprised, actually, by the amount of support and interest my family’s story generated, on Facebook in particular. It received more than 1000 “reactions”, 167 shares and almost 100 comments. The comments provided me with helpful feedback. Overwhelmingly, the comments were religious in content and highly supportive. My mom’s illness takes very religious and cultural forms. Indeed, she has always been a devout Christian. This response definitely makes me think I should touch on more of the religious aspect of her life, and religion and mental illness as a subject matter. It’d be challenging, but it’s worth the try.
Other things I may do is start a YouTube channel where I talk about being an advocate and caregiver for my mother. I might even try writing a book or two. Those articles I’ve been meaning to write on racial/ethnic and class disparity in mental healthcare definitely need to get done first, though.
The “most important election of our lifetimes” chorus is at a fever pitch this year, given the top presidential candidates’ very different styles and rhetoric. Is it as important for everyone, however? If recent history is any guide, too many people with serious mental illness (SMI) and their families will continue to grossly and unjustly suffer, regardless of who wins.
1 in 5 Americans live with a mental health issue such as anxiety or obsessive compulsive disorder. Less known, however, is that 4% of the population, 1 in 25 Americans, suffer from a SMI such as bipolar disorder, major depression, or schizophrenia. Of this subgroup, about 40% go untreated. They end up being disproportionately included among the incarcerated or homeless. In fact, about one-third of the homeless suffer from an untreated SMI. Too many others are prematurely lost to suicide.
Part of what makes people with SMI difficult to treat is the nature of their illness. For more than fifteen years now, my mother has been living with a SMI. She suffers from severe persecutory delusions, paranoia, and hallucinations. She believes cameras in the walls and neighbors watch and monitor her, and, at times, that her food, water and the air are poisoned. Daily, she claims that evil spirits are attacking her, causing her both physical and emotional pain.
My family and I have tried desperately to get her help, but nothing has succeeded, not family interventions or meetings with religious clergy, not meetings with counselors or psychiatrists. To her own detriment, she does not believe she is ill. Researchers call this lack of insight “anosognosia.” Approximately, 50% of the people with SMI suffer from it.
And, as the statistics suggest, my mother has experienced extreme hardship. She has gone from being employed, married, and middle-class to being unemployed, divorced, and impoverished. Recently, she experienced a two-year stint of homelessness, living mainly in her car in California’s Central Valley, at which time, both her physical and psychological health greatly deteriorated. Physically, she suffers from diabetes, congestive heart failure and, most recently, kidney failure. She has not always heard voices, but her psychosis has deepened to the point that she now hears voices around 80% of the time.
The government and mental health care system share blame for our plight. Through lack of responsiveness and by design, they have made it exceedingly difficult to get help for my mom. At various times, my sister and I have contacted and met with different county departments and agencies. More than once, for example, we had to badger Adult Protective Services (APS) and the Public Guardian Office (PGO) just to check in on my mom. Ultimately, APS passed the buck to the PGO.
The PGO, in turn, concluded that my mom was competent enough to take care of herself. In the same breath, however, the PGO manager told me that my mom needed to be involuntarily psychiatrically hospitalized and treated! PGOs can and do take responsibility for the care and housing of people with mental illness. This was the manager’s way of telling me they did not want responsibility for someone who was not stable and adherent to psychiatric treatment. Like the APS, the PGO was washing its hands.
Sure enough, my mom has been involuntarily hospitalized, what in California legal terminology is called a “51/50 hold.” Altogether, she has been 51/50ed six times for putting herself in danger, two times in San Francisco (more liberal), two times in Fresno, and two times in Bakersfield (both more conservative). Each time, however, my mom was released in under 24 hours without even being psychiatrically treated, ostensibly for no longer meeting the “legal threshold” of endangerment, but also unquestionably because of a lack of psychiatric hospital beds.
The stats bear this out. Not unlike other areas of health care, for decades, deep cuts have been the trend. According to the Treatment Advocacy Center, nationally, we now have 11.7 psychiatric beds per 100,000 people, as compared with 337 beds per 100,000 people in 1955. In California, according to the California Hospital Association, the number of psychiatric beds available statewide decreased by 2,700 — or nearly 30% — from 1995 to 2013, while the state’s population grew 20%!
Why? Part of it is because mental health funds are being improperly diverted. In California, the money legislatively intended for people with SMI is going into programs and services that are not accessible to or effective for people with SMI. In fact, recently, the State Auditor found that mental health money and outcomes are not being adequately monitored.
There is also a bipartisan consensus on continuing to close psychiatric hospitals and under-resource those that remain open to reduce public spending, in the name of “fiscal responsibility.” Ronald Reagan may have initiated the closing of psychiatric hospitals, but plenty of Democrats, including President Obama and California Governor Jerry Brown, are continuing what he started.
To her credit, Hilary Clinton recently released a promising mental health plan. It calls for decriminalizing mental illness and supportive housing, among other things. There is virtually no mention, however, of the lack of quality psychiatric hospitals or treatment programs that could help people with SMI— As if it is not even up for discussion. There is, also, no mention of support for a congressional bill (H.R.2646), which attempts to partially address these problems. Donald Trump has not made mental health care reform a priority at all, but Clinton as of yet has not shown a true appreciation of the scale of the problem.
Sure, it is easy enough to say that Clinton’s plan provides at least a basis for improving our mental health care system. As a political scientist, I understand politics is the art of compromise. I also know, though, that health care insurance companies hold too much sway and politicians, of both parties, are more responsive to Big Business and the affluent, rather than the indigent, old, and disabled, their rhetoric and policy statements aside. I have, after all, contacted various political representatives to try and get help. Some inquiries have been made reluctantly on my behalf when dealing with slow and/or incompetent agencies/departments, but not any one of them has ever asked me what kind of policies or programs could help my mother.
Instead of waiting for enough help from the system, I took a leave from my job to try to take care of my mom. I moved her in with me this past February. At the time, she was living in a hotel. Her health is frail and I worry she does not have much more time to live. She, and others like her, deserve access to quality hospitals with well-trained, and culturally responsive doctors and staff. We look forward to the election results, like most of the country. But regardless of the outcome, we will continue to live day to day just trying to survive in a society that is, in many ways, “mad” and needs healing and treatment, too.
My dad came to visit my mom and I for a couple of days this past week and I used some of the time for respite from care-taking duties. I went to go see Suicide Squad, a movie based on the DC comic book franchise. The squad is basically a team of super criminals. One of the super criminals is the character Harley Quinn, who in the movie is the girlfriend of a homicidal maniac, the Joker, the character of Batman comic book fame. Like the Joker, Quinn is also an immensely violent, psychotic killer. Her weapons of choice include a colorful, personalized baseball bat which she uses to bludgeon people to death.
As the movie demonstrates, there is little question that Hollywood, as with much of our pop culture, demonizes people with serious mental illness (SMI), particularly people with schizophrenia. In the movie, Quinn openly admits to hearing voices and experiencing other hallucinations. She exhibits some endearing qualities, like loyalty to her friends, but fully embraces and relishes in her homicidal and criminal urges.
As any mental health advocate would quickly point out, however, these portrayals are highly unfair and misleading. That fact is that most people with serious mental illness are much more likely to be victims of violence, vulnerable as they are to homelessness and compromised physical and psychological health. Theft and assault are the most common crimes committed against people with schizophrenia. For women with schizophrenia, rape is a constant danger (1). This demonizing of people with serious mental illness undeniably contributes to the gross discrimination and victimization people with SMI experience in their daily lives, whether by other people or at the hands of the government.
To help combat this prejudice and stigma, mental health advocacy organizations, like the National Alliance on Mental Illness (NAMI), spend millions of dollars on educational programs and public relations campaigns. Indeed, I personally benefited from attending a NAMI family-to-family educational program when I first started trying to get help for my mom years ago. Learning about the different types and symptoms of mental illness and hearing the stories of other family members helped me develop immense insight and compassion for people with SMI and their families, including my own.
Not only does my mom have a SMI, but she has multiple brothers and sisters that lived or are living with SMI too. One of my few memories, as a child, of my schizophrenic aunt is of her having a violent outburst during a family gathering. She attacked my uncle and left a large, bloody scratch near his eye. My sister and I, terrified, huddled in the corner behind the living room couch, while the adults tried to restrain her until the police arrived.
Another time my aunt, without warning, hit her mom, my grandma, over the nose with a glass ashtray. Needless to say, I grew up afraid of my poor afflicted aunt. And for quite some time, I was also in denial of what kind of SMI my mom had. Initially, when trying to help my mom receive treatment and care, I thought she was perhaps bipolar. “She can’t be schizophrenic,” I’d say to myself. “Schizophrenics are horribly deranged.” Slowly but surely, and through the course of dealing with much personal grief, I’ve come to accept that symptoms of schizophrenia were expressing themselves in my mom too. Hearing her talk to herself for the first time was absolutely heartbreaking. She mimicked the demon I came to think of my aunt as in my youth. She was the demented monster or “Psycho” in so much Hollywood movie lore. (My mom has been diagnosed with schizoaffective disorder.)
Fortunately for my family, my mom has never expressed the level of violence my aunt did. She yells and curses often times, but mainly to the voices tormenting her. She gets angry at me, of course, but manages to not swear at me or try and physically hurt me, to my surprise and relief. That’s not to say she hasn’t ever physically assaulted me, or sworn at me though, because she has.
Years ago when living with me in San Francisco, my mom punched me in the stomach one day when I stepped in front of her to prevent her from walking away from our apartment. A police officer was on the way to take her to General Hospital for a 51/50 hold. She was in an acute episode that morning and angry and hostile, claiming the people who were dropping off their children for school across the street were spying on her. As she turned around to go back into the apartment, she coldly said to me, “I’m going to fuck you up when I return [from the hospital].”
Fortunately, for us both, my mom is significantly less hostile and belligerent towards me than she used to be, even though her psychosis is more of a constant. Sometimes I wonder, though, if I should be more guarded. Maybe I should lock my bedroom door at night when she’s in an acute episode, like I sometimes used to. As a trained social scientist, I like to rely on evidence and research to inform my opinions. But the research on the connection between SMI and violence is woefully inadequate. Indeed, not much on it exists at all.
In a recent blog on the subject, well-known mental health advocate and journalist Pete Earley says, “Because of stigma, we always begin every conversation about violence by explaining that individuals with mental illnesses are no more violent than the general public and, in fact, are more likely to become victims than perpetrators” (2.) He’s talking about MH advocates and reformers, but the same can perhaps be said for researchers and/or academics. After all, they can be closely aligned with or dependent on advocacy organizations, like NAMI, that are reluctant to talk about violence committed by the mentally ill. Instead, they prefer to focus on positivity and recovery.
The fact of the matter is, however, that many people with SMI languish without successful treatment for years, if not for their whole lives. For many that suffer from persecutory paranoia and delusions (i.e. the belief that people or some kind of entities are out to get them), it’s likely they will violently lash out during a time of acute psychosis through physical force. (In their minds, they are defending themselves.) When my mom punched me in my stomach and verbally threatened me, I know it was because she believed an evil spirit was controlling me or possessing me. My mom’s illness takes a very cultural and religious based form.
With respect to the sparse literature, much of it fails to illuminate the subject matter. One study published in an academic psychology journal in 2014 shows a relatively weak connection between violence and people with SMI. One thing of particular interest is the following, though; of the 429 crimes committed by 143 offenders with three major types of mental illness, researchers found that 3 percent of their crimes were directly related to symptoms of major depression, 4 percent to symptoms of schizophrenia disorders and 10 percent to symptoms of bipolar disorder. To me, this is interesting because it challenges my preconception that schizophrenics are among the most likely to commit crimes and/or violent acts. As the authors admit, though, there are some problems with the study’s methodology that need to be improved (3).
Just this past month, however, a recent study was published by the Treatment Advocacy Center that specifically focuses on family homicides committed by people with SMI. The study is persuasive and innovative, in that it uses national data provided by the Federal Bureau of Investigation (FBI), Center for Disease Control (CDC) and numerous media reports. In essence, it extrapolates media reports on family homicides committed by people to SMI onto national homicide data. It’s arguable that the data underreports the connection or numbers, since, for one, many homicides committed by people with SMI probably go unreported by the press. Nonetheless, the data shows that people with SMI do commit murders at higher rates than the general population.
According to the report, there were approximately 4000 family homicides committed in 2013. The number of family homicides associated with SMI was 1150. This was 29% of all family homicides and 7% of all homicides in 2013. People with SMI make up approximately 4% of the US population any given year. Thus, they obviously accounted for a disproportionate percentage of family homicides and total homicides nationwide. Other things of note in the study are the specific family relationships and comparison to changes in the national homicide figures (4).
The majority of homicides involving parents and their children were committed by people with SMI. In addition, around 67% of parents killed by children were killed by children with SMI. Around 50% of the children killed by parents were killed by parents with SMI. And although homicide rates in the US have decreased in recent years, there has been virtually no decrease in the number of children with SMI killing parents or parents with SMI killing children (4).
As in the high profile cases that have rocked national attention recently, most of the people with SMI who commit murders are receiving inadequate or no psychiatric treatment. And in many instances, violent acts committed by people with SMI are preceded with warning signs such as obvious psychotic symptoms (e.g. severe hallucinations) and verbal threats. Key indicators also include abuse of drugs and/or alcohol and past acts of violence. While it can be difficult to distinguish which factor is more influential (Is it the abuse of drugs or not taking psychiatric medication that plays a bigger role?), not taking effective medication no doubt increases the chance for violence, regardless of an individual’s personality traits and/or circumstances.
We undoubtedly need more and better studies on the connection between violence and SMI, in order to better inform our policy and political decisions and change the way we as a society think about mental illness. Ignorance and fear leads to stigma, and the reality is that people with SMI and their families need more compassion and access to MH treatment and services than what is currently being provided. Violence, after all, takes various forms. Leaving people alone to suffer from their hallucinations and delusions is a form of violence. Leaving family members alone to deal with and try to help them is also violence, a psychological torture really. As long as this situation is allowed to continue, then nobody’s hands are truly clean.
Torrey, E. Fuller, Surviving Schizophrenia (New York: Collins, 2006), 287-289.
It has been a couple of months since my mom was denied mental health services by the county (See my last post.). I of course made phone calls and sent emails to various people and complained. An email to my Board of Supervisor got me in contact with the Director of Behavioral Health.
After communicating back and forth with the Director for a few weeks about different options, including trying to enroll my mom again into an “intensive MH program,” the Director suggested that I contact another department, the Department of Aging and Veterans Services (AVS). She said my mom could try utilizing their peer support program. A bit flabbergasted, I thought, “Are you kidding me?” Was the peer counselor supposed to help my mom “break the stigma” of mental illness and convince her to see a psychiatrist? I played along, though, figuring that by going this route, we can at least say that we did that and it did not work, in the event the county tries to deter us from MH services again.
I ended up talking to Jill, a supervisor, at AVS. Jill was empathetic and responsive when I explained to her my mother’s history and the current situation. She stated explicitly, however, that she was not sure what her program could do for my mom. She said that they do not focus on mental health and, to the degree that they deal with people with mental health problems at all, they are people with low level anxiety and/or depression. At this point, I just felt like Madelyn was giving me the run around intentionally. She was set to retire sometime in August and I figured this was her way to avoid dealing with me until then.
Regardless, Jill genuinely expressed a desire to help. We made plans for a clinician to visit my mom in our home the following week. It was not entirely clear what the clinician would be exactly doing, but regardless, I figured I could request that they help me/us access MH services at some point in the process.
As with any appointment regarding my mom’s health, I was somewhat worried how it would go. I waited till the day before to tell my mom about the planned visit with the clinician. The less time she has dwelling about things, the better. And even though she said she was fine with it, I knew anything could happen the actual day of. She had recently walked out of two appointments, one being with a Gastroenterologist and another for a MRI.
Vinnie, the clinician, appeared to be in her early thirties. I could not help but wonder how long Vinnie had been working with the county and what kind of formal training and/or education she had. I was hoping she would be skilled enough to work with my mom.
She impressed me relatively quickly. She was very warm, assuring and friendly. Within fifteen minutes of talking with my mom, my mom opened up to her about some of the hardship she has endured in her recent past. Car accidents, falls, being estranged from her family, medical abuse–She mentioned various things she did experience, like the car accidents, but also things she did not experience, like a nurse dressed in black trying to poison her at a hospital. Vinnie listened to her attentively, regardless of any personal doubts she may have had about the accuracy of my mom’s accounts. This naturally helped build trust between Vinnie and my mom.
Towards the end of what was a short, initial visit, Vinnie explained to us that the specific program she was a part of was called “Project Hope.” As part of the program, she would make eight visits, one per week, to spend time socializing with my mom and in order to help my mom create personal goals and a plan for achieving them. “OK fine,” I thought. I could use some help with my mom in those areas. My mom was disinterested in many social outings I have suggested and just the company with another person would be good.
During Vinnie’s second visit, she would mention what I was hoping would come out of the process. She said that she thought it would be a good idea for my mom to return to “Senior Access” for an evaluation. Without mentioning the mental health component explicitly, she said they could offer a team of support people to help my mom deal with her medical and emotional needs. That is how I have explained it to my mom all along. I have avoided the word “psychiatrist” and think it should be avoided as much as possible. My mom did not refuse or resist the idea, to my relief.
So for now, this is where we stand. My mom is enjoying Vinnie’s visits. My mom considers her a friend and looks forward to their time together. During Vinnie’s third visit this past week they swapped cooking recipes and Vinnie talked with my mom about utilizing some Senior community resources. Our appointment, our second attempt, to gain access to MH services is in a couple of weeks.
My mom has been living with me six months now and we are really no step closer to having her psychiatric illness treated. I am of course hoping for the best, but know by now not to expect quick, effective results, if any results at all. Ideally, she needs daily monitoring, counseling and treatment, the kind only available in a hospital and/or treatment facility setting. The alternative is to do nothing, however, but accept the injustice and cruelty the system afflicts on the both of us. I refuse to live like that, though. I learned that from my mother.
For three months, I had been waiting to enroll my mom into a county mental health program. I wanted to do it much sooner, but we had to wait for my mom’s Medi-Cal to officially transfer from another county. Dealing with slow government bureaucracy has been a constant frustration.
The program is coordinated, intensive outpatient treatment, typically referred to as a Full Service Partnership (FSP) in California. I didn’t have a lot of faith in the program, since outpatient treatment has never proven successful for my mom in the past. At most, I was hoping we’d get lucky with a decent treatment team and I could get some help in coordinating and monitoring her various physical/medical needs.
As it turned out, we wouldn’t even get our feet in the door. My mom would be outright rejected at the assessment. After about forty minutes of questions pertaining to personal and family medical history, the clinician suddenly asked my mom if she had a mental illness AND whether or not she wanted to access county MH services. Flabbergasted, I thought “What the hell?! Surely this MH worker knows that there are people with mental illness that don’t believe they’re ill!”
Predictably, my mom became agitated and, as she is prone to do, started talking openly about how her spiritual visitations are real. After a few minutes listening to my mom and trying to calm her down, I asked the clinician as to why she would ask my mom those questions. She responded by referring to the notion of “informed consent” (i.e. voluntarily agreeing) and how that requires her to be completely truthful to my mom about what they do. She then went on to explicitly say that she cannot enroll my mom into the program, unless my mom answers in the affirmative to those questions.
I was furious, but in as calm a manner as I could, I expressed my immense disappointment with her approach. Among other things, I told her if that was county policy, it was misguided and that there are more tactful, sensitive ways to try and help people like my mom. I walked out a minute after, as she continued to ask my mom questions and fill out forms.
Just more damning proof of how the MH system is setup to deny the most seriously mentally ill help, I thought. It hasn’t always been this way.
In 1963, President Kennedy asked Congress to spend $3 billion to replace state hospitals with a network of community mental health centers. The development of more effective anti-psychotic drugs seemingly made it possible for patients to return to their communities.
However, for nearly twenty years, no change occurred, due to political circumstances and events such as President Kennedy’s assassination. In the 1980s, though, numerous lawsuits against patient abuse in state hospitals became common. In response, courts passed a flurry of patients’ rights laws. Compared to before, it became exceedingly difficult to involuntarily hospitalize somebody. This negative publicity was all increasingly cash strapped state governments needed. They began to close state hospitals and discharge patients.
Patients’ rights advocates declared victory for what was being called “deinstitutionalization.” Fast forward some near thirty years later, though, and the money for community centers that were supposed to replace state hospitals has never materialized. Consequently, instead of adequate treatment, too many people who suffer from mental illness end up homeless, incarcerated or prematurely dead. This largely occurs due to the difficulty of being able to involuntarily hospitalize someone; but also because the psychiatric hospitals that remain are inadequately staffed and funded.
Despite the high economic and social costs this generates, the MH system is vehemently defended by various interests and groups, from directors in government on down to health care and social work professionals, to patients’ rights groups and many consumers themselves. Their political zeal in defending the status quo is matched by their ideological commitment to civil libertarianism, a view that prioritizes maximum freedom for the individual. In the MH system, this means that inadequate or no treatment at all for people with a serious mental illness is justified in terms of “freedom of choice” and “personal agency.”
I was reminded of this when my mom was hospitalized last December for congestive heart failure complications. I met with the hospital social worker to get more information on assistance in finding a residential care facility for my mom, in case we needed it. As those conversations tend to go, I brought up my frustration with inadequate care and treatment from the MH system. While expressing genuine sympathy to my family’s plight, the social worker didn’t mince words when she said that my mother had a right to refuse treatment. She went so far as to ask me what my mother wanted to do. I said what I usually say when I hear this: “She doesn’t want to take psychiatric medicine, but she wants to be with her family. We can’t live with her, unless she is stabilized, though.”
The ridiculous irony in what happened at the assessment makes the indictment of the MH system all the more clear. Setup, ostensibly, to respect and protect the rights and freedom of people, my mom was denied county MH services, which both her and I pay taxes for, because she is too sick to acknowledge she has a serious psychiatric illness. Her Right to health services was denied because she isn’t able to understand and reason sufficiently enough. This is the same system that in the past has deemed my mother in court to be mentally incompetent and in need of a conservatorship, due to her mental illness (Yes, I’ve been her conservator. That was a failure and a waste of thousands of dollars for me.). My mother’s health hasn’t improved since then. It has gotten remarkably worse!
Apparently, however, the clinician didn’t handle the assessment “appropriately.” Both the office manager and Director of Behavioral Health, whom I contacted out of my indignation, affirmed to me that a person does not in fact have to admit or accept they have a mental illness to access county MH services. While they assured me that they would help us if we decided to return to access services, I’m now wondering what their quality of services are like. Are other county MH workers as poorly trained or as bad at their jobs?
I also don’t buy that it was just a lack of judgment, frankly. The extreme commitment to civil libertarianism permeates every corner of the MH field. As the office manager admitted, the clinician was trained in an actual MH program at a school. In other words, she was taught and trained by people committed to this philosophy and in strategies and treatments that are by and large woefully inadequate for the most seriously ill. If poor judgment played a part, ideological purism helped cloud it.
I’ll eventually try and persuade my mother to try and enroll again. I have no delusions, however, that she needs and deserves quality treatment in a psychiatric hospital or facility with compassionate, responsive staff and doctors committed to making her as whole as possible again.
(This is a political article I wrote days before the CA primary. There was so much I could get into just about CA government and society. I focused on some laws/policies that had national relevance, though.)
The presidential primaries have put a spotlight on healthcare, mass incarceration and increasing poverty in the U.S. A related issue isn’t receiving adequate attention, however. That being insufficient access to mental healthcare treatment for people who have a serious mental illness (SMI).
According to NAMI, 1 in 4 adults– approximately, 58 million Americans– lives with a mental health disorder in any given year. 1 in 17 lives with a SMI such as schizophrenia or bipolar disorder I. If not treated effectively, SMI is oftentimes severely debilitating. It can lead to joblessness, homelessness, poverty, incarceration and even the premature loss of life.
This reality has been exacerbated the last few decades as state hospitals and treatment centers have closed and healthcare costs have skyrocketed. For example, in 1955, there was 1 psychiatric bed for every 300 Americans. In 2010, there was 1 psychiatric bed for every 7,100 Americas. According to a recent report released by the Treatment Advocacy Center (TAC), only 3.5% of the state hospital beds that existed in 1955 were still in operation by the first quarter of 2016.
In California, the situation is particularly stark. According to a 2012 TAC report, the state eliminated 16 percent of its beds between 2005 and 2010, leaving just 14.2 public psychiatric beds per 100,000 people – far below the 50-bed standard considered necessary to provide minimally adequate mental health treatment. In 25 counties in the state, there were no psychiatric beds at all.
For too many people with SMI, jails and prisons become their homes and treatment centers. In 2007, 19 percent of CA state prisoners were mentally ill. By 2012, 25 percent were. Given that people with SMI often suffer from severe delusions and hallucinations, conditions in jails and prisons, which can include periods of solitary confinement and/or abuse from guards, can end up making an inmate’s psychosis worse, thus reducing the chance for successful recovery.
This abysmal situation in CA persists, despite increased national attention on people with SMI. With presidential campaigning in CA underway, it’s worth looking at what, if anything, the candidates propose to do for SMI treatment and care.
Like healthcare in general, for people with SMI, access to mental healthcare largely depends on coverage, funding and parity laws that prevent discrimination. On these issues, it’s pretty clear that both Democratic candidates, Bernie Sanders and Hillary Clinton, take better positions than the Republican frontrunner, Donald Trump.
Both Clinton and Sanders want to expand healthcare coverage to more Americans. This would undoubtedly benefit people with SMI, since many are poor and unemployed and suffer from concurrent medical/physical ailments that require attention, treatment and monitoring. Both also have expressed support for helping people with substance abuse problems when talking about people with mental illness.
In comparison, Trump is vague when speaking about his healthcare policies, but his website lists ideas that are consistent with economic conservatism. Trump wants to eliminate Obamacare and incentivize competition between insurance and pharmaceutical companies. On mental health specifically, his website just states the need for eliminating privacy laws that prevent family members from receiving information about their sick loved one’s condition and care. While a worthwhile idea, overall, his views, if implemented, would leave too many people with SMI remaining uninsured and vulnerable to the ongoing predations of profit driven corporations.
Regarding parity laws, both Sanders and Clinton support President Obama’s landmark law banning discrimination in treatment against people with mental illness. Seven years after the law was passed, however, recent research shows that insurance companies are still finding ways to deny or stall treatment. Lax enforcement of the law is partly to blame and both candidates, presumably, would support increased and robust enforcement. They have failed, however, to emphasize this or call on President Obama to do so. If prodded, Sanders would probably point to this behavior by insurance companies as more reason to institute single-payer healthcare, as part of his call for a “revolution in mental health.”
Most relevant of all to the gross shortage of psychiatric hospitals and treatment centers is the Institutes for Mental Disease (IMD) exclusion. Instituted in 1965, the IMD places severe limits on Medicaid expenditures that would go towards psychiatric facilities and substance abuse centers. Consequently, this has contributed to facility closures and increased the incentive for states to send psychotic patients and/or patients with addiction problems to regular hospitals, in order to be at least partially reimbursed by Medicaid. This does little to nothing to address one’s psychiatric illness and leaves patients at the mercy of an already under-resourced hospital and overworked hospital staff.
Repealing the IMD would definitely be welcomed by many states and family members of people with SMI. In the least, presidential candidates who claim to have the best interest of the mentally ill and disadvantaged in mind should be mentioning the nature and extent of the problem. After all, to do nothing or continue to do too little has proven to be economically wasteful, politically wrongheaded and societally inhumane. Who will be the first candidate to take up the call?
Living with my mom this past month has me again thinking about the legal barriers involved in involuntary hospitalizations, the legal/medical notion of “gravely disabled” and the larger politics in the mental health system.
I say again because for the last 6 to 7 years my mom’s unwillingness and inability to seek treatment for her serious mental illness have on numerous occasions forced me and my sister to try and get her involuntarily hospitalized, what’s known legally in California as a 51/50. As my family has learned, however, getting my mom 51/50ed AND treated (i.e. stabilized) is virtually impossible. For one, the legal requirement is ridiculously high and various “checks and balances”, or roadblocks, are embedded throughout the entire process that limit the chances for successful treatment.
Legally speaking, a person must meet one of three criterion to be 51/50ed. A person must be suicidal, a serious threat to someone else or “gravely disabled.” If an authority figure, like a police officer or field clinician, deems a person meets one of these criteria, then the person is sent to an inpatient facility, usually a county public hospital. Once there, the person is assessed by a psychiatrist. If deemed necessary, treatment with medication is attempted. If the person is non-compliant, as is usually the case with someone who has a serious mental illness (Why take the medicine if you believe it is poison and can kill you?), the person may be held for an extended period of time in order to treat him or her, with coercion if necessary (Research shows that most patients end up taking medicine voluntarily.).
The tending psychiatrist, though, can decide at any point that the person doesn’t fit the criteria for being involuntarily hospitalized. There is also judicial involvement. At different intervals, a judge decides how long and whether or not the person can be held or continue to be held against their will. So essentially, it’s possible for a judge to overrule both the tending psychiatrist and the law enforcement officer or field clinician that had the person initially 51/50ed.
In my mom’s case, she has been 51/50ed at least four times in the last 6-7 years. Two of those times, she was found confused and incoherent on the side of a road in her car by police officers. At the time, she’d regularly drive off in her car in a psychotic episode, usually because she believed she was in grave danger. The two other times, she was failing to treat her diabetes adequately. Her glucose, consequently, rose above 400, which is considered life threatening. A field team that I called deemed her a threat to herself because she didn’t believe the readings, and was saying that she actually didn’t have diabetes at all.
Each time, however, and despite my pleas for them to treat her, she was released by the hospital in under 24 hours for no longer meeting the 51/50 criteria and without taking any psychiatric medication. It became obvious that hospital personnel were taking much of what my mom was saying during their questioning at face value. My mom can “hold it together” decently when she has to and she learned very quickly how to answer their questions. “Are you suicidal?” “No.” “Are you hearing voices?” “No.” “Will you begin treating your diabetes adequately?” “Yes.” In a conversation I once had with the tending psychiatrist at San Francisco General Hospital, he explained to me that he wanted to treat her, but based on the case he could build, he believed the judge would decide to release her. He decided to himself on that basis.
These 51/50s all happened within a three year time period, between 2008 and 2011. In this same period, my mom’s housing was becoming more precarious. She would regularly get into conflict with her neighbors and/or property managers over various things, like accusing her neighbors of spying on her and even breaking into her apartment. Like clockwork, she would eventually be evicted, often times within months of finding a new place. Starting in 2012, my mom became effectively homeless, living in a car. I thought with certainty that her being homeless would strengthen the case for involuntary treatment on the basis of her meeting the “gravely disabled” criterion. In fact, I was told by the psychiatrist at SFGH that if she was homeless, he would have had a stronger case to argue in front of the judge. At that time, my mom was staying with her brother, so had a home to return to. Her being actually homeless, however, wouldn’t matter much. In fact, it didn’t matter at all.
The California state code sounds pretty straight forward. It states a person is considered gravely disabled when “The person’s mental condition prevents him/her from being able to provide food, clothing and/or shelter…” In another section, it reads “This does not necessarily mean homeless, as a homeless person who is able to seek housing (even in a temporary shelter) when weather demands it would not fall into this category.” Each of these sections would be grossly distorted by authorities countless times.
My mom’s health and safety were in regular jeopardy when she was homeless. Her physical health suffered greatly, undermined as it was by the malnourishment, lack of rest and sleep and increased stress that accompanied her condition. She would at times show up at my home in San Francisco or my sister’s home in Fresno unannounced, weak, tired and distressed. We would let her stay to rest and often use the opportunity to call authorities to conduct a “welfare check” on my mom. The police and ambulance would show up and, while my mom would be assessed by the medics, we would request that the police initiate a 51/50. While not in an obvious acute psychotic state, we’d explain to them her history of not treating her psychiatric condition, her prior 51/50s and current state of homelessness. Knowing the exact wording of the state code, we’d say explicitly that she was homeless and unable to care for herself adequately, due to her psychiatric illness. We’d try multiple times, hoping a different police officer would prove more helpful. However, as if reciting from the same department briefing, they all would say almost verbatim that to be considered “gravely disabled”, a person has to be lying down on the railroad tracks, in their own defecation, naked!
Over time, it became clear to me in talking to various mental health personnel that this extreme interpretation of “gravely disabled” was actually the official view in the mental health field. Once, a county social worker, who was part of a field clinician team, told me that “technically, a car is adequate shelter.” Another social worker another time told me that as long as a homeless person is able to put a plan together, a plan consisting of where they are going to eat and sleep, that person wasn’t gravely disabled. Of course, my mom would lie and make it sound like she did have a plan. Her deteriorating state and past history of self-neglect weren’t factors whatsoever! The fact that she had an untreated serious mental illness was a non-factor! The fact that she was immensely suffering was a non-factor! Whether in the hospital or out, MH workers and law enforcement instead took her just at her word.
I don’t doubt that the interpretation of “gravely disabled” has become more extreme as funding and resources, i.e. beds, for treatment centers have been increasingly cut. Yes, obviously there needs to be safeguards and civil rights protections. But as with my mom’s situation and countless others, the reality is this: People with serious mental illness are being unjustly neglected, unless they do something criminally and/or ghastly wrong. It should never have to reach that point for most.
At this point, having my mom assessed for a possible 51/50 isn’t even an option really. It has proven pointless and would just cause unnecessary stress for us both. I feel this way, despite seeing my mom on a daily basis continue to suffer from severe delusions and hallucinations. What she calls “spiritual attacks” are pretty constant and rare is the night that she is able to sleep soundly. She spends a good portion of the day and night rebuking and even swearing at the “evil voices” that torment her and that she blames for causing her pain in different parts of her body. She even says that they try to make her trip and fall. This makes day to day tasks and business immensely difficult for her to accomplish. She’ll forget things that I say or ask her to do. She won’t remember to take her medicine regularly for various physical ailments, unless I remind her. And just about everything needs to be negotiated with her, from when to run errands to what we are going to have to eat, since she relies on the “good voices” to tell her what she should do. This is on top of her severe physical limitations that have developed, due to inadequate self-care, unstable housing and stress. My mom should be in a hospital or treatment center, until stabilized, so she has a better chance at piecing her life back together.