By Bradley Nuimano Tarr
At the age of eleven, I began showing signs of having a serious brain disorder (SBD), commonly referred to as a serious mental illness. Until age twenty-six, I cycled in and out of hospitals well over twenty times because of my symptoms. My participation in an Assisted Outpatient Treatment (AOT) program gave me my longest period of stability.
My symptoms first emerged in the fourth grade when I experienced depression. I was sent to a hospital for two weeks and placed on medication.
Then, from ninth to twelfth grade, I experienced suicidal thoughts, insomnia, paranoia, and mania. One psychiatric medication I was on made me so rageful that I ended up punching several holes in my mom's cabinets and walls. I believe it was a side effect because I had been having a good day until that point, and the anger was entirely unprovoked. My diagnosis during this period of my life was bipolar or unspecified mood disorder.
Four years later, while at college studying philosophy and humanities, my symptoms flared up again. I had gone three days without sleep, had angry outbursts over relatively inconsequential matters, and behaved in a very paranoid manner. I was even pacing around campus, talking to myself. At my worst, I threatened to harm other people because I was convinced they were conspiring to hurt me. My behaviors were so concerning that I ended up spending fourteen days in a New England hospital before returning home.
Within four weeks, my symptoms scared my mom so much that she dropped me off at the front door of the county hospital. My mom tells me she was afraid that I would hurt her. In case my delusions or hallucinations flared up in the middle of the night, she would lock her bedroom door as a precaution. Although I never considered harming her, I understand where she was coming from.
My grasp on reality was tenuous, and I became illogical. It is hard to reason with someone seeing, hearing, and smelling things that are not there. My mom could not cope with me and continue to share an apartment with me. I had to get out.
In the winter, I became homeless. I had estranged myself from my family. Not even my siblings knew how to cope with me. A homeless shelter operated by a local mental health agency took me in. For about a month, I survived in quarters that were crowded and cramped. I lived there with about a dozen people, many of whom were far sicker than me. After several days of being verbally threatened and bullied by others, I punched a hole in the shelter's wall. This landed me in fourteen months of intensive probation through the mental health system. I had to pay nearly $1,000 in restitution for the hole in the wall.
Thankfully, my mom took me back into her house. But that was a small solace. While on probation, I had to manage several things at once. I had to report to the local municipal court building two or three times per week for random drug and alcohol tests. I had no car and if I couldn't get a ride to the building about seven miles away, I would be forced to walk there. I walked regardless of the weather, which was often freezing and stormy. While on probation, I also had to go to psychotherapy, anger management classes, schizophrenia classes, psychiatric appointments, and court hearings with the judge, all of which were scheduled frequently. If I missed anything, I would have automatically spent a month in jail. To my relief, I eventually graduated from probation.
Two years later, I again entered a symptomatic phase, which was the worst of my life. From February to May 2019, I was hospitalized five times in three months. I was depressed, then manic, then depressed again. I had severe bouts of insomnia, paranoia, and delusions.
I believed I was the director of the National Security Agency. Another time, I thought I was the Secretary of Defense. I saw all things around me as coded messages from the government. For two weeks, I was a 007 agent. I thought I was encountering MI-6 agents almost everywhere I went. They were even dispersed and scattered throughout the crowd during Mass at Church. For a week I just knew that I was a member of the Roman Curia, an advisor to the Pope. I thought I was married to my high school sweetheart.
I had visual, auditory, and olfactory hallucinations. I was convinced for about three weeks that my mom smelled like an open sewer. I was terrified of her. For a week after that, I kept hallucinating that I was vomiting all over my room, but my mom said I hadn't. This made me distrust her even more.
After three months, AOT entered my life. And it turned my whole life around for the better. I was brought before a judge who organized a team of well-trained experts around me. I was gifted with a new psychiatrist. Finally, I was diagnosed with schizoaffective disorder.
As another integral part of my AOT treatment team, I was given a case manager. He met with me every fourteen days. He counseled me and helped me to establish and stay grounded in my goals. My case manager took me anywhere in the county that I needed to go. He not only managed my reports to the local mental health agency on my updated improvements and goals, but I also considered him a life coach. He was the first person I called if I was having a bad day, and the first person I informed if I experienced that my psychosis or insomnia were getting bad and taking hold.
For a while, until I no longer needed it, I was given a psychotherapist, who helped me organize my thought patterns and maintain a healthy outlook. The team also coached me on how to slow down racing thoughts, and on how to prematurely catch, and root out, the beginnings of delusions.
For around sixteen months, once a month, I reported back to the judge. The AOT team invested in me. They didn't just label or categorize me. They saw me as a person, not just as a case study. The approach of AOT is holistic, the whole person not only recuperating for a time, but being formed into a rhythm of continuous healthy living. I graduated from AOT.
AOT brought me from a hopeless recycling of symptomatic episodes to a place where I could anticipate instability and counteract it. AOT even gave me the tools to educate my family about my condition. They now know if I'm symptomatic. For instance, I always report if I went the previous night without sleep to my mom. And we have a standing protocol that if I go three nights in a row with very little, or no sleep, we immediately call a squad to check me out and notify my psychiatrist for an emergency appointment.
These are all things that I wish we'd had in place as preemptive measures since I was eleven. It took AOT to educate us on catching symptoms early. AOT should be implemented nationwide. Unfortunately, many counties and even three states (Massachusetts, Maryland, and Connecticut) lack AOT. The AOT program communicated to me, "It is not your fault that you're in this mess. You merely have a sickness. But we are here for you. We'll help you get, and stay, out of it." Without a doubt, this type of treatment saves lives, as I believe it saved mine.
Help End A Discriminatory Law Denying Treatment and Fueling the Homeless and Addiction Crises
The U.S. is facing one of the worst public health crises in history–and we’re not referring to COVID-19. News reports say the country is in the midst of a mental health crisis. While many are just now learning about the lack of access to psychiatric services, the truth is, this crisis has been going on for decades, and it’s far worse than most people realize.
Lack of Access to Psychiatric Services Affects Everybody
This inability to access psychiatric services has consequences for everybody, not just people suffering from illnesses. City streets, neighborhood parks and freeway offramps across our country are filled with the homeless - many of whom have serious brain disorders, commonly referred to as serious mental illnesses. Hospital emergency departments are overcrowded with people in crisis who have nowhere to go. There simply are not enough psychiatric beds. As a result, people with serious brain disorders, including children, sometimes wait in emergency rooms for days and even weeks at a time.
Recently in New York, two people were shoved onto subway tracks in separate instances by individuals with a history of psychiatric symptoms. Preventable tragedies occur regularly because people with serious brain disorders do not receive the necessary medical care they need.
From the Treatment Advocacy Center:
Prevalence and Treatment Rates*
8.3 million adults with schizophrenia or bipolar disorder mental illness (3.3% of the population)+
5.5 million – approximate number with severe bipolar disorder (2.2% of the population), 51% untreated+
2.8 million – approximate number with schizophrenia (1.1% of the population), 40% untreated+
3.9 million – approximate number untreated in any given year (1.6% of the population)+
Consequences of Non-treatment*
169,000 homeless people with serious mental illness**
383,000 inmates with mental illness in jails and prisons
50% – estimated percentage of individuals with schizophrenia or bipolar who attempt suicide during their lifetimes
44,193 suicide deaths in 2015
10% – estimated percentage of homicides involving an offender with serious mental illness (approximately 1,425 per year at 2014 homicide rates)
29% – estimated percentage of family homicides associated with serious mental illness
50% – estimated percentage of mass killings associated with serious mental illness
A bill sponsored by California Congresswoman Grace Napolitano introduces sensible and long overdue solutions. The "Increasing Behavioral Health Treatment Act" (H.R. 2611) would repeal a discriminatory law known as the IMD Exclusion that prevents access to medically necessary treatment for people with serious brain disorders.
The bill would also require state Medicaid programs to improve patient access to outpatient and community-based behavioral health care, expand crisis stabilization services, and facilitate care coordination between providers and first responders.
What Is the IMD Exclusion and Why Must It Be Repealed?
The IMD Exclusion prohibits federal payment under Medicaid for medically necessary treatment for adults in Institutes of Mental Diseases–which are psychiatric hospitals and residential treatment facilities with more than 16 beds. It bars Medicaid enrollees with “mental diseases” from receiving the same level of care that enrollees without severe mental illness receive for other illnesses such as cancer and heart disease.
In doing so, the exclusion denies equal protection under the law to the very group of people it is supposed to help. The IMD Exclusion is blatant discrimination against people with serious brain disorders like schizophrenia and bipolar disorder.
As a result of this law, many psychiatric hospitals and residential treatment centers have closed, while others limit their beds to 16. The need for treatment beds far exceeds this artificial cap.
Some states have sought Medicaid demonstration waivers that allow them to bypass the IMD Exclusion. However, this is a piecemeal approach to a national problem, and to date only eight states have an approved waiver.
We must end the suffering by bringing about parity and a right to treatment under Medicaid/Medicare. It is inhumane and unjust to deny medical treatment to those in need and leave them abandoned, criminalized or left to die in our streets.
Not only is it unjust, billions of tax dollars are wasted, which the National Shattering Silence Coalition refers to as the #CostOfNotCaring.
Who Supports the Repeal?
In addition to the National Shattering Silence Coalition, the following nationally recognized organizations support the full repeal of the IMD Exclusion:
National Association of State Mental Health Program Directors
Mental Illness Policy Org
Treatment Advocacy Center
Schizophrenia & Psychosis Action Alliance
National Association of Medicaid Directors
National Association for Children's Behavioral Health
To date, the "Increasing Behavioral Health Treatment Act" is supported by the following legislators:
Rep. Grace Napolitano (D) - California (sponsor)
Rep. Alan Lowenthal (D) - California
Rep. Karen Bass (D) - California
Rep. Salud Carbajal (D) - California
Rep. Ted Lieu (D) - California
Rep. Maxine Waters (D) - California
Rep. Lucille Roybal-Allard (D) - California
Rep. Nanette Diaz Barragan (D) - California
Rep. Tony Cárdenas (D) - California
Rep. Susan Wild (D) - Pennsylvania
Rep. Linda T. Sánchez (D) - California
Rep. Mike Levin (D) - California
Rep. Earl Blumenauer (D) - Oregon
Overcoming Misguided Objections
Some fear that, by repealing the IMD Exclusion, we are going to regress to the days when everyone with a serious brain disorder (and even some without) were locked away forever in horrible institutions where they were tortured and experimented on. No one wants to go back to those days. Our goal is to provide a hospital bed when needed, a continuum of care in the community, and #HousingThatHeals so people with serious brain disorders will have every opportunity to live their best lives.
In addition to increasing the number of hospital beds, repealing the IMD Exclusion would allow for increased reimbursement for inpatient care and all facilities at various levels of care, including access centers and longer term #HousingThatHeals.
Having higher levels of reimbursement will enhance services in all of these levels of care, including more work with psychologists, and multidisciplinary teams so that the models can move away from just a pill and a bed to more comprehensive care. We absolutely do still need many other things, including comprehensive community based care. Repealing the IMD Exclusion would help with both acute care treatment as well as with those who need longer term treatment all along the continuum of care.
We need many more representatives to support this bill. We also need someone from the Senate to introduce a bill mirroring H.R. 2611 in the Senate.
You can help by taking the following actions today:
Visit our National Shattering Silence Coalition Campaign to End the Discriminatory IMD Exclusion page and click on the two “calls to action” on the right side of the page.
1) Email your representative using the online form and ask them to co-sponsor H.R. 2611
2) Email your senator using the online form and ask them to introduce legislation that mirrors H.R. 2611 in the Senate.
3) Call your legislators to schedule a meeting to discuss the bill and ask for their support.
Background and talking points are provided on the webpage. For more information on why the IMD Exclusion must be repealed, please see NSSC’s IMD Exclusion Position Statement.
Tips for Effective Meetings With Legislators
Please take action today! Help us to gain access to #abedinstead of a jail cell, homelessness, or death.
If you are as passionate about the need to build a more compassionate world for those suffering from serious brain disorders and their families, please join our coalition. Together, we can change the world.
#justiceforSBD #righttotreatment #HIPAAhandcuffs #lifelongcare4SBD #parityforsbd #fundingequity #abedinstead #treatmentbeforetragedy #ShatteringSilence
* Numbers and percentages of US adults
+National Institute of Mental Health, 2016
**2015 Annual Homeless Assessment Report
dying with her rights on
By Laurie Turley
In the zeal to impeccably protect the patient's civil liberties and rights, an increasing number of troubled and psychotic patients are what I choose to term dying with their rights on.--Darold A. Treffert, M.D.
The following story provided by Laurie’s anguished sister demonstrates the tragic barrier that current Health Insurance Portability and Accountability Act (HIPAA) regulations place between persons affected by serious brain illnesses, including schizophrenia, and access to effective treatment that could be monitored and augmented with the support and care of family members. This problem is most pronounced when the brain illness causes a lack of self-awareness of the disease, a condition known as anosognosia. The National Shattering Silence Coalition’s Points of Unity include its position that HIPAA is in need of modification to explicitly allow the sharing of information about diagnosis and treatment between healthcare providers and families of adults who present with unstable serious brain illnesses.
My sister, Carol, was a high honors student in high school, graduating valedictorian in her senior class and receiving a full scholarship to study journalism at an Ivy League college. Something happened while she was away at school, but my brother and I, being several years younger, weren’t privy to the hushed conversations between my parents and older siblings about just what was the matter. I knew Carol could be volatile and prone to outbursts of anger and irrational reasoning. I also knew she was creative and full of ideas about the world that I found intriguing and inspiring.
I Did Not Realize for Years That She Was Ill
I left home at seventeen when I went to college. I never really lived with my family after that, only returning home to visit on holidays. By then, Carol was living with a man with whom she bore a son. She held jobs—a staff writer for a magazine and a writing teacher at the local university. She wrote beautiful poetry. Writing and books were her love and her life. While family gatherings were often uncomfortable and awkward when she was around, I wasn't present to witness the worst of her behaviors. I was unaware of just how seriously ill she was and only knew she was “different.” I loved her, loved her writing, loved her creativity, and loved my sister for herself.
It wasn’t until several years later, after I had married, lived three states away, and my second child was an infant, that my mother called to tell me they had to have Carol committed to the state psychiatric hospital. Just like my mother's own brother, my sister was involuntarily admitted to the same state hospital where my uncle had lived many years before his death. I learned that my sister had inherited the family illness: schizophrenia.
Details of the years following that first hospitalization are sketchy, at least from what I knew. On trips home to see my family, I visited Carol in the hospital, in her home, and in the outpatient mental health center where she introduced me to her friends. I cried with her when her twelve-year-old son was removed from her home by Child Protective Services and put into foster care, where none of us were able to see him due to legal restrictions and a “conflict of interest” of our relationship with her. I rejoiced with her when she finally agreed to stay on medication and when she found a psychiatrist who was willing to work with her—in her words, “like a tinker, an alchemist”—until they found just the right combination of medication that would keep her stable for the next twenty years.
Even though she was medically stable, Carol still struggled daily to find her place in a world that couldn’t see her as the beautiful soul I knew. Most saw her only as a mentally ill person. Medication kept her stable, but she never fully recovered. She never broke free of schizophrenia and many of the symptoms that medication could not erase. Sometimes the medication failed, and she regressed as her medication was readjusted.
Carol aged prematurely, lost her teeth, was at times morbidly obese, and developed diabetes. She often had a dulled expression. She was violently assaulted in her apartment by someone who took nothing but her medication. Yet she maintained her generous nature and her creative drive to write poetry and fiction. I collaborated with her on compiling some of her poems, accompanied by my photographs, into a hard-cover book. In the spring before Carol died, we self-published this book and gave several copies to friends and family. She was even able to sell a few of them. It had always been her dream to be published, and even though this wasn’t the same as having her poems accepted by a large publishing company, she felt her dream had come true. It was the last good thing I was able to do for her.
Whole for a Time, But Then She Needed Help
A few years before Carol died, we began having long phone conversations. I was struggling with a crisis within my own family, and she alone was willing to listen to my problems any time, day or night. She talked me through many of my darkest times, having firsthand knowledge of the grief and helplessness that comes from seeing someone you love suffer. In exchange, I asked her probing questions to help me understand her disease. She generously shared insights into her illness and tried to help me understand what was impossible to comprehend. She was wise, giving, and forgiving. She was my rock of wisdom and support. When we spoke over the phone, my sister was complete and whole.
I visited Carol in her brand new apartment, which had been subsidized and furnished by charitable agencies. It was bright, with high ceilings, wood floors, and big windows. It had two bedrooms and clean furniture. I spent a weekend with her. We cooked meals and went shopping. She talked about wanting to teach a writing class again. I had every hope and reason to believe that my sister was going to thrive.
A little less than a year later, Carol began to sound halting in our phone conversations and sometimes rambled without direction, or her speech was slurred. She told me she had begun to hear voices again and that she was afraid she needed to have her medication adjusted. I encouraged her to do so soon. She promised me she would. She shared that she hadn’t seen her psychiatrist in some time but was going to make an appointment.
I now know that she probably never followed through. I believe that she had regressed too far into the illness to be able to make that rational choice on her own. Serious brain disorders such as schizophrenia take away a person’s ability to reason.
My own life situation took a dreadful turn. I was preoccupied with trying to cope with things at home, so I didn’t get to visit her that whole next year. When I finally did, nearly a year after she had moved into her new apartment, I found her lying naked on the couch. Her apartment had transformed from a comfortable, homey, bright space to rooms full of clutter so deep I could hardly make my way through. Unwashed dishes and molding food filled the sink and covered the stove. Dirty laundry, messy counters, and filthy tabletops created unsanitary conditions.
They Said She Was Her Own Guardian and Kept Me From Helping
How did this occur? I had to get help for her. With the help of Carol’s adult son and some other siblings, I got the numbers of her case manager and her former treatment providers. None of them would talk to me, except to say that my sister was her own guardian and had the right to refuse treatment, which she apparently did. Each of them told me that she was entitled to make her own choices, and there was nothing I or anyone else could do.
I knew because Carol told me, that she feared being sent “back up to the Hill,” which was what the state psychiatric hospital was called. I knew she feared to be in a locked ward and forced into treatment. I knew she had relapsed into a psychosis that rendered her unable to care for herself. I could not prevent her downfall, nor could I convince her to seek the treatment she desperately needed.
A visiting nurse knocked on the door while I was there to deliver her insulin, which Carol was responsible for administering to herself. The nurse tested her blood sugar levels. They were way above normal. While my sister sat outside on the deck and stabbed her arm with the needle of insulin the nurse had given her, I went with the nurse into the apartment. Amidst the filth, we discovered several vials of unopened insulin, evidence that she hadn’t taken her diabetes medication. It was obvious that she also hadn’t taken her antipsychotic medication.
I begged the nurse to help me help Carol. It was obvious that she needed to be on medication and back in treatment. If I could just make the nurse see and acknowledge that my sister was in need, surely she would file a report and help me get my sister into treatment. But the nurse repeated what every other care provider I’d called in the past month had told me: “Your sister is clearly in need, but she’s her own guardian. If she refuses treatment, there is nothing anyone can do.”
I left Carol in that horrible state, in that unsanitary, unsafe condition, with my heart broken. I returned home, promising her I would continue to call her and stay in touch. I promised myself I wouldn’t give up trying to persuade someone—anyone—to get her out of there and into treatment.
A week or two later, I received a phone call from Carol’s son. She had been taken by ambulance to the hospital with a serious and invasive lung infection. During the several weeks that she was under medical care, she resumed her psychiatric medication, and her ability to reason returned, even while her physical health continued to decline.
“They Should Have Let You Help Me. I Wasn't In My Right Mind.”
In one of our last phone conversations, Carol shared that she felt life returning within her, that she felt like she was awakening from a bad dream. She said to me, “I don't know how I got so bad. I was doing so well. How did things get so bad?” I told her we all knew she was deteriorating and tried to help her, but she had refused help. There was nothing we family members could do.
Her next words were among the last she ever spoke to me: “They should have let you help me. I wasn’t in my right mind.”
Not long after that conversation, the infection in my sister’s lungs—which I have no doubt began as a result of the unhealthy condition of her apartment—progressed into severe pneumonia. Despite the doctors’ efforts, they couldn’t clear the infection. After a week of intensive care, it developed into sepsis and took her life.
All our efforts to rescue her from descending back into the illness she couldn’t manage on her own had been futile. It took an invasive lung infection to get her back on antipsychotic medication, but it was too late to save her life. The laws designed to protect her civil rights were the very laws that prevented those who loved her most from helping her when she was unable to help herself.
Why Do Laws Deny the Most Seriously Ill Their Right to Live?
“They should have let you help me. I wasn’t in my right mind.”
Those words will haunt me until the end of my days. Those words are why I believe that families need to be listened to. Families, regardless of whether or not they have legal guardianship, should have the right to intervene and get their loved ones to humane and sound mental health treatment when they see the need. They’re the ones who see the signs first and most clearly.
My sister’s untimely death is why I believe that so many people who are left to “die with their rights on” are, in truth, denied their right to live because of our current restrictive laws. Carol’s last words to me continue to be my inspiration. They inspire me to fight for treatment for the seriously mentally ill who are unable to help themselves.
“They should have let you help me. I wasn't in my right mind.”
by Carol A. Snyder
Butterfly, stay away from my net,
It’s there on the ground.
I will not pick it up.
I will not chase after you as others do.
I would chase your colors, lovely lemons,
Butters, purples, monarch’s orange
and blacks away from the flowers
that others would snap their nets over.
Send you after the freedom
that you surely deserve.
I do not like being trapped.
Why should you?
THIS IS MY HEART, TAKE CARE
Because you’re probably going to squeeze my heart like clay,
I make it mud and send it to the river
to wash clean over stone and pebbles
to make it blue and green as the river water
fresh and sweet as river-rinsed air
And hope you’ll see it, what the river pours forth, as good.
even though you’ll probably never recognize me.
Even then, I wish this good for you.
To all reading this blog post, please, if you care about those living with serious mental illness -- whether you are someone living with serious mental illness, someone who cares, a family member/caregiver, or a mental illness professional -- join us. We need your voices.
Treffert, Darold A. “Letters to the Editor: Dying with Their Rights on.” American Journal of Psychiatry 130, no. 9 (1973): 1041. doi:10.1176/ajp.130.9.1041.
By Sandra J. Nosek RN, BSN
People with serious mental illness (SMI) are one of society’s most vulnerable populations. Yet instead of compassion and care, people with SMI are met with indifference and discrimination. As a result, they are left homeless, jailed, and—as family members and clinicians know—subject to danger, physical illness, and suffering.
Serious Mental Illness Is Very Serious
An estimated 4.6 percent of the population has SMI, which includes diagnoses of bipolar disorder, schizophrenia, obsessive-compulsive disorder (OCD), and post-traumatic stress disorder (PTSD), to name a few. The National Institute of Mental Health (NIMH) defines SMI as “a mental, behavioral, or emotional disorder resulting in serious functional impairment, which substantially interferes with or limits one or more major life activities.” Individuals with SMI may suffer from hallucinations, delusions, severe anxiety, mania, obsessions, and compulsions that are so debilitating they keep them from holding a job, maintaining relationships, taking care of themselves, or functioning in society.
SMI is a disease of the brain. Though most symptoms of SMI can be reduced or eliminated with medications, many individuals with SMI are left untreated. A major reason for lack of treatment is anosognosia, that is, lack of awareness of being ill intertwined with their inability to comprehend they need help. Without treatment, many individuals with SMI spiral downward, often leading to homelessness or incarceration.
How Did the Seriously Mentally Ill End up on the Street and in Jail?
In the mid-twentieth century, the United States deinstitutionalized people with mental illness by closing psychiatric hospitals. Americans thought this was the humane thing to do because conditions in institutions were appalling. However, the conditions on the streets for those with SMI were just as appalling. The most seriously ill who were unable to care for themselves were left without treatment and support because the outpatient system didn’t adequately provide services for them.
Policies That Hurt and Discriminate Against SMI
A series of ill-conceived policy decisions led to the mental illness crisis we have today--perhaps none more so than the IMD exclusion. The IMD exclusion is a policy that prevents federal Medicaid funds from being used to care for individuals aged 21 to 64 in institutions for mental disease (IMD) with more than 16 beds. This law prevents people with SMI from being housed and treated for their illness. It discriminates by treating mental illness differently than medical illnesses. In effect, it throws someone into the street who is too ill to care for themselves. We would never condone abandoning people to the street who have been diagnosed with cerebral palsy, quadriplegia, multiple sclerosis, stroke, or Alzheimer’s, but we routinely do it to people with schizophrenia and bipolar disorder.
Later legislation did not reverse this disastrous exclusion. In 2018, in response to the opioid crisis, President Trump signed the Individuals in Medicaid Deserve Care Act, which allows states to file amendments for thirty days of treatment in an IMD for low-income adults with substance use disorder. This legislation helped those who need treatment for substance use but ignored our SMI crisis. States have largely refused the difficult process involved in seeking a waiver of the IMD exclusion for the mentally ill.
Left Without Care
Today, more than 110,000 individuals with SMI are homeless and 392,000 individuals with SMI are incarcerated because of failed mental health policy. Chronic homelessness costs the taxpayer an average of $35,578 per year, and leaves the most vulnerable unable to meet their basic needs for shelter, food, and hygiene.
Incarceration of this population costs the state and federal governments up to $50,000 per year per person. Those in jail or prison are unlikely to receive adequate treatment. California’s proposed 2019/2020 prison system budget is $800 million for mental health care, yet the prison system is unable to meet the standards of care. In the United States, 29 percent of jails are housing individuals with SMI who have no charges filed against them. People with SMI are often charged with domestic violence, causing greater risk for homelessness and victimization.
Without public policy changes as well as family, community, and government support, those with SMI will continue to be left without care.
Federal Legislation Is Needed to Provide Supportive Homes for the SMI
We can’t reduce homelessness and incarceration significantly without repealing the IMD exclusion through new legislation. Call it the SMI Act. This “SMI Act” should include other provisions such as stipulating therapy to support individuals and families, but its most important task is eliminating the IMD exclusion. The act will make Medicaid match state funding for permanent housing for individuals living with SMI, in any setting, regardless of the number of beds, and eliminate the 190-day lifetime cap for benefits. The SMI Act will make Medicaid pay fifty percent, matching state funding, to provide permanent housing, food, treatment, and care to those facing this disease. This change is what we need to eliminate homelessness and incarceration due to SMI. Providing housing will remove individuals from the streets and jails who have SMI and benefit our communities by creating a safer atmosphere for all involved.
Why has it been so difficult to get the IMD exclusion changed or eliminated? One reason is lack of stakeholder support. Many government officials don’t see the need for the measure, perhaps because it doesn’t affect them personally. Lack of government support appears to be the biggest barrier to IMD reform. Others say increasing awareness and policy reform through active participation and prevention of homelessness is the key to eliminating homelessness and incarceration of this vulnerable population.
It is of the utmost importance for everyone to come together, talk, and write to promote this policy change. Write to members of Congress, senators, government agencies, mental health organizations, psychiatrists, medical doctors, nurse practitioners, law enforcement, the Department of Health and Human Services, and even the White House. Working alongside the National Shattering Silence Coalition in obtaining a repeal of the IMD exclusion and instituting a policy such as this proposed SMI Act will improve health disparities between the SMI and others, by reducing morbidity and mortality, and improving the quality of life for those living with SMI.
With the presidential race well underway, we at the National Shattering Silence Coalition (NSSC)—those living with serious mental illness (SMI), family members, treatment providers of the seriously mentally ill, and their allies—were hopeful when we heard candidates had responded to a survey on mental health policy. That survey, which the coalition “Mental Health for US” sent to thirteen leading presidential candidates, provided an opportunity for each candidate to present their positions on mental health and addiction.
But when we read the survey questions and the candidates’ responses released in August, we were disheartened to learn that those with serious mental illness were ignored. Some candidates neglected to respond to the survey at all, indicating they do not consider mental health policy and the needs of those with serious mental illness important issues. Both the survey and the candidates’ responses overlooked many of the most obvious problems with our broken mental health system.
In their survey responses, some candidates focused on anti-stigma campaigns, investing in community mental health, suicide prevention programs, mental health parity, and integrating mental health services into schools. These programs do little to save the lives and health of the seriously mentally ill. Neither these programs nor Medicare for All would eliminate the most significant barriers to treatment.
The NSSC has solutions to address these barriers to treatment, which we outline in our Points of Unity. In July, we asked presidential candidates where they stand on these issues and requested that they sign our Serious Mental Illness Points of Unity Pledge of Allegiance For Presidential Candidates. We sent the pledge to the top six Democratic presidential candidates—Joe Biden, Elizabeth Warren, Bernie Sanders, Pete Buttigieg, Kamala Harris, and Beto O’Rourke—along with President Trump and Governor Bill Weld. Not one of these eight candidates has responded.
The Impact of Serious Mental Illness
Serious mental illness is a medical illness that needs treatment. But right now in the U.S., of the estimated 54.6 million family members of those with SMI—22% of all eligible voters—up to half of them are unable to get their loved ones into treatment, even when they desperately need it.
A staggering 1.8 million people per year who suffer from SMI are booked into jails when they should be in hospitals. While the vast majority are arrested for misdemeanors such as trespassing or disorderly conduct caused by their illness, psychosis causes violent behavior in some individuals with untreated serious mental illness. Too many are incarcerated because our mental health system failed to provide treatment that could have prevented these actions.
Our family members are not getting the help they need because of the lack of understanding of SMI by far too many in government and their failure to understand that the #CostOfNotCaring far exceeds the cost of caring for this vulnerable population. Unfortunately, our presidential candidates do not appear to understand the importance of addressing this humanitarian crisis. We are more than ready to help enlighten them.
The Most Pressing Barriers to Treatment of the Seriously Mentally Ill
Anosognosia. Probably the greatest misunderstanding among policymakers about SMI is the assumption that everyone who needs psychiatric care has the capacity to independently seek and adhere to treatment. Those of us who have a seriously ill family member or regularly care for them professionally know all too well that those with schizophrenia or bipolar disorder often do not realize they are ill. This lack of insight is called anosognosia. According to the Treatment Advocacy Center, anosognosia occurs in 50% of individuals with schizophrenia and 40% with bipolar disorder. Anosognosia is the number one reason why people refuse treatment.
The standard of “danger to self or others.” Family members desperate to get help for their loved ones are forced to wait for them to become “a danger to self or others” before they can attempt to get help because involuntary commitment laws are so stringent. By the time our loved ones meet this standard, either tragedy has already struck or they are so ill that they become combative when the police are called to assist in getting them to a hospital. They are likely to be arrested before or after being taken to the hospital, or even shot dead on the scene. This inhumane practice of allowing people to deteriorate until they become threatening or violent must end.
Shortages of psychiatric beds, exacerbated by the IMD exclusion. Even those who do seek help on their own are often refused treatment. Too often, people in a mental illness crisis wait for days—even weeks—in emergency rooms because of psychiatric bed shortages. The number of psychiatric beds declined by 97% between 1955 and 2016. These closures have been driven in large part by a discriminatory law known as the IMD (Institutions of Mental Disease) exclusion, which bars Medicaid funds from being used in the treatment of adults (persons aged 22 through 64) in institutions of mental disease facilities having more than 16 beds for the specific treatment of mental disorders.
HIPAA Handcuffs. A frequent frustration to those of us who are battling for treatment for our loved ones is what we call the Health Insurance Portability and Accountability Act (HIPAA) handcuffs. Hospitals, prisons, and mental health professionals apply HIPAA privacy laws so rigidly (and often incorrectly) that families often can’t even ascertain their ill family members’ whereabouts, never mind participate in the treatment of their dangerously ill relatives. When our SMI family members over the age of 18 go missing, hospitals and shelters often won’t tell us where they went or even whether or not they are present. Doctors won’t tell us which medications have worked or have been prescribed. A person with anosognosia who doesn’t believe they are ill, or someone suffering from psychosis, is not likely to fill out a HIPAA release form, which would allow healthcare providers to share information with family members. Institutions take advantage of this circumstance to protect themselves from scrutiny and liability.
This issue was supposed to be resolved with the passage of the 21st Century Cures Act in December 2016, which required the Secretary of Health and Human Services (HHS) to issue guidance clarifying the circumstances under which healthcare providers and families can share and provide protected information about a loved one with SMI. It also required the Secretary to develop model programs and training for health care providers to clarify when information can be shared and training for patients and their families to understand their rights to obtain treatment information.
In December 2018, the HHS Department of Civil Rights issued its response to the required changes. This new guidance has not worked for family members and caregivers who are still being shut out when attempting to access care on behalf of their loved ones. The rules for when providers can share information are too ambiguous in the case of people suffering from a serious mental illness. Family members must be allowed access to their loved ones’ information when they are in the throes of psychosis, severe mania or depression, and when they are suffering from anosognosia. Family members who are the primary caregivers of someone with SMI also need to be given access to the treatment team and kept informed of current medications and appointments.
The presidential candidates’ responses reflected no awareness of these problems. The candidates didn’t seem to know that some people with mental illness need hospitalization as well as the informed help of their family members. Instead, their responses ignore the needs of the seriously mentally ill, perpetuating a broken system that is failing those living with SMI and putting them on the path to homelessness, incarceration, or death.
Our Points of Unity, offering clear solutions needed to provide compassionate care for those with SMI, are described below. To the presidential candidates, we are waiting for your response and your pledge to help those with serious mental illness and their families. How will you help fix the broken mental health system and enable our loved ones with serious mental illness to receive the treatment they need and deserve?
NSSC’s Points of Unity
As a nonpartisan coalition of individuals and organizations from diverse political, economic, and cultural backgrounds, we agree to the following shared values and principles of unity:
To all reading this blog post, please, if you care about those living with serious mental illness -- whether you are someone living with serious mental illness, someone who cares, a family member/caregiver, or a mental illness professional -- join us. It's free to join! We need your voices.