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.
An estimated 4.6% 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.
To learn more about NSSC and join our coalition, visit nationalshatteringsilencecoalition.org.