By Pat Morgan
In 1983, I answered the call from my church’s priest, whose compassion for homeless people and his work to help them in Memphis (and nationally) defies description. The scene when I walked into Calvary Episcopal Church’s elegant “great hall,” was stunning, but not because of the massive chandelier or the red velvet drapes at the windows. Seated in the solid oak chairs along the wall were about a dozen ragged, forlorn, and sickly men. I had been a real estate broker, banker, and elected official in the county government previously. So, not much prepared me for the hardship and illnesses I was about to encounter.
I’d seen a lot of poverty in my life, lived some of it when I was a child, and worked to help end some of it as an adult. I knew more than I’d ever wanted to know about addiction, having learned some of the most important parts (too little and too late) at Al Anon. I knew a little about brain illness, commonly referred to as mental illness, and nothing at all about the mental health system. Although nothing works to end homelessness without housing, it became painfully clear to me that homelessness is about a LOT more than the lack of affordable housing. Serious brain illness can contribute to homelessness. When people are unable to meet ordinary demands of life and cannot attend to their basic biological needs due to illness, loss of housing can ensue.
For the next five years, I spent almost every weekday afternoon talking with, and later assessing, the needs of our visitors while helping to develop, and then directing, always as a volunteer, Calvary’s “Street Ministry.” During those years, hundreds of people, primarily men, walked, staggered, stormed, slipped, or were so intoxicated or psychotic that they half-floated through our doors and into our hearts. At least a third were mentally ill and more than a few were actively psychotic. We listened, learned, provided vouchers for shelter, personal needs, bus tickets, or prescriptions when there were no other sources. While I cared deeply about all of them, a few, usually those who were clearly mentally ill, stole my heart and then broke it, and would finally send me on a decades-long battle to secure for them the inpatient treatment they desperately needed. They didn't necessarily want it, and rarely, if ever, received it.
The director of the state's acute care mental hospital in Memphis had finally tired of my impassioned (or desperate, heartfelt, consistent) appeals, and told me what I didn't want to hear. "Pat,” he said, “You know they’re committable and I know they’re committable, but I can't say it, because if I were to commit them, the stark reality is I simply don't have enough beds.” He wasn’t just talking about furniture. He needed staff.
I needed to know why he couldn’t get what he needed. It would take decades, but along the way I’d learn about why our mental health system, locally, statewide, and nationally, was so broken. Thankfully, two of Memphis’ mental health centers began sending us crisis specialists to help our visitors, who’d acknowledge that they were suicidal or homicidal, get the three-day inpatient treatment they desperately needed in the new crisis unit, with follow-up services. They were remarkable, and I learned a lot, but not enough.
When Alepeachie, my all-time-favorite homeless person and only "success story" was found dead in the apartment the crisis specialists had found for him, I “lost it.” Alepeachie had slept in a series of cardboard boxes near a downtown church for years and it had taken months (and a lot of KFC) for me to gain his trust, which was easily transferred to the crisis specialists. I'd seen him a few days before and he'd looked good, but when I asked him how he was doing, he'd said "I don't hear the voices telling me to kill myself anymore, but my life is so empty I still want to kill myself." I’d meant to call the crisis specialists but had simply forgotten by the time I got home. This was before smartphones had been invented.
Devastated at his funeral, I vowed that I’d never stop trying to help people with serious brain illnesses. That promise would lead me back to college (at age 48) and then on to Washington, D.C., for a semester in American Politics. My new career path led to a presidential appointment as a program specialist in the U.S. Interagency Council on Homelessness. Returning to Memphis some years later, I continued working on homelessness, with a special focus on those with serious brain illnesses.
I am now retired, but remain a passionate and dedicated advocate for people with serious brain disorders who captured my heart so many years ago. And I vow to continue for as long as I am able. I am honored to serve as an advisor and advocate for the National Shattering Silence Coalition.
Pat Morgan has worked to help homeless people, especially those with serious brain disorders (SBD), commonly referred to as serious mental illnesses (SMI), for decades. Her experience includes serving for five years as the unpaid director of a church-based "Street Ministry" to homeless people, seven years as a presidential appointee to the staff of the U.S. Interagency Council on Homelessness during the Clinton Administration, and ten years as the director of Partners for the Homeless in Memphis, TN. Upon her retirement, her volunteer work focused on homeless people with SBD through the Room in the Inn program in Memphis. She is the author of two books, “The Concrete Killing Fields,” and “We Hardly Knew Them, How Homeless Mentally Ill People Became Collateral Damage.” A relentless advocate, both books include multiple stories about her work with homeless people suffering from SBD and call for major changes in our mental healthcare system to meet their needs.
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
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.