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
TALK TO ME! I TALK BACK!
By Khadeeja Morse
In a psychotic episode, my son, Mikese, drove a car into a family who was bicycling outside their home on June 24, 2018. Pedro Aguerreberry, a 42-year old father of two sons, aged three and eight, was tragically killed as a result.
The state of Florida has determined that Mikese is not guilty by reason of insanity. On April 19, a judge will finalize this decision and determine where Mikese needs to be placed.
This horrible tragedy might never have happened if Mikese had received the treatment he needed—the treatment his brain illness deserved, and the treatment my son pleaded for when he took himself to our local police station and confessed he might hurt someone.
We will never stop reading about horrible events like my family’s until more people understand the obstacles to treatment our loved ones face, and until unjust laws are changed. That’s why I talk back.
Our fight continues to free Mikese from the criminal justice system and allow him to be treated in a psychiatric hospital.
We seek to have him removed from the criminal justice system completely, with no oversight. Mikese’s civil and legal rights were violated from the very beginning. Mikese was not in his sound mind to even be able to accept his Miranda rights based on all of the evidence at the time of the arrest. This was well documented in all of the records from the day of the arrest.
Why should Mikese be removed from the criminal justice system? There are a number of reasons.
Beyond the Mental Illness Stigma Is a Brain Disorder
Most people don’t realize schizophrenia and bipolar disorder are actually serious brain disorders (SBD). The American Psychiatric Association describes both schizophrenia and bipolar disorder as brain disorders.
Being diagnosed with one of these disorders is bad enough. Having a combination, which is what Mikese has, is worse. To further complicate things, Mikese also suffered from anosognosia, which is when a person lacks awareness of their illness. Anosognosia is a common symptom of schizophrenia and bipolar disorder.
Mikese had the wicked trifecta of schizophrenia, bipolar disorder and anosognosia. The hard, cold truth is that many people suffering from these illnesses end up homeless or incarcerated.
The IMD Exclusion and How It Contributes to Tragedy
The IMD exclusion prevents federal Medicaid funds from being used to care for individuals aged 21 to 64 in institutions for mental disease with more than sixteen beds. It basically discriminates because an illness is classified as “mental” instead of medical.
Since there’s no funding for mental illness, even if there are hospital beds available, a person with an illness classified as a mental illness can’t fill the bed. He simply gets released to his own accord, like Mikese was.
An excellent article by the National Shattering Silence Coalition explains why and how policies like the IMD exclusion discriminate against people with SBD, which is typically referred to as serious mental illness (SMI).
Why Classification Matters
I can’t give you a better example of why classification matters than another heartbreaking news story that happened on the same day as our tragedy. A distraught mother describes losing consciousness due to a medical emergency while bathing her infant daughter. Her baby drowned, and sheriffs classified this as an accidental drowning. You’ll hear her say she had no idea what happened. Click here to watch.
This video is especially hard for me to watch because when the police were at our house interrogating Mikese, I recall him saying the same thing as this mother. He said he felt something take over his body, and he didn’t know what happened.
The mother has a medical illness. Mikese also has a medical illness, but his is classified as a “mental” illness. Both conditions led to actions that resulted in loss of life. Yet each situation was handled very differently by the medical and legal systems.
Now can you better understand the ridiculousness of the IMD exclusion?
HIPAA Laws Further Complicate Things
In an additional unfortunate and related twist, HIPAA privacy laws often prevent families from finding out any information about their loved ones before, during, and after hospitalizations.
What’s worse is that loved ones are often released to the streets, alone, with no support or guidance. They are left to fend for themselves while managing a medical condition that significantly impairs how they think. How does that make sense?
Can you imagine just releasing to the streets someone suffering from a stroke or heart attack before they were fully recovered, without any notification to a family member or loved one about the condition, care, or treatment?
The deadly duo of the IMD exclusion and family-unfriendly HIPAA laws often creates an insurmountable barrier for families. I call it a deadly duo because this combination is what led to the tragedy.
When Mikese took himself to the police, they “Baker-acted” him and he was admitted to Gracepoint, a psychiatric hospital in Florida for people deemed a threat to themselves or others.
The Baker Act is the authorization to involuntarily confine someone for up to seventy-two hours. It is important to note that while the Baker Act involves involuntary confinement, Mikese requested help by initiating contact with the police. The fact that he sought help is part of why he should be freed from the criminal justice system and allowed to get the help he was seeking before the tragedy.
Mikese was still psychotic at the hospital, so much so that we had to take over his medical decisions because he wouldn’t take medicine and attacked a public defender who came to see him.
He was kept in the hospital for about seven days and released because he was supposedly stable. We know he was far from stable. Despite needing longer treatment to stabilize, he was prematurely released from the hospital because there was no funding for “mental” illness. The IMD Exclusion negatively impacted him.
Also, there was no aftercare to support him when he was discharged. Since he’s an adult, Mikese was released to the streets, alone, with a messy stack of hard-to-read paperwork, a bus pass and a “good luck.” Within days of his release, the tragedy happened.
Proof Is in the News
When we realized the police were not going to be truthful about what happened with Mikese, we knew we needed to speak up.
This was our first formal interview with a local news station. Listen all the way to the end when the reporter speaks to a local expert about the lack of available funding and space to support patients with mental illness.
As I have often said, this crisis of lacking mental health care is the worst kept secret in the country, getting very little media attention or funding.
Who Else Will Be Held Accountable?
This is why, after another local news story about Mikese’s sentencing, I wrote an open letter on Facebook to State’s Attorney Andrew Warren, asking who else he would hold accountable for Pedro Aguerryberry’s unfortunate and unnecessary death. On air, Warren states, "This case shows the consequences of Florida's broken mental health system, and the victim's wife and kids are left holding the pieces.”
His statement shows the great hypocrisy of the system, acknowledging only one side of the equation. It is true that the Aguerryberry family experienced a horrific loss that never should have happened. However, they aren't the only ones who are left holding the pieces.
Far too often, families like ours, who have been desperately trying to support our severely mentally ill loved ones with very few external resources, are left holding the sharpest pieces of the broken mental health system. We are marginalized and vilified because of the undesirable behavior of our loved ones. We get words and platitudes of understanding and support, especially after a tragedy or around election time, but not real, sustainable or meaningful proactive support.
Why I Talk Back
Click here for all images from my TikTok video. As you look at them, please keep in mind the whole story.
I talk back because my son couldn’t speak for himself. I talk back because it was very clear to us very early on that the police weren’t going to be honest about his brain illness. They had already begun to vilify and dehumanize Mikese during their press conference. They left out vital information about his illness and even the fact that they were the last ones to hospitalize him.
I talk back because there are thousands of people suffering from untreated SBDs. I talk back because those thousands of people have thousands of loved ones who are doing the best they can for their seriously ill loved ones. They too suffer profound pain and trauma as they watch their loved one slip away and are helpless to do anything about it.
I talk back because we need to be seen, heard and acknowledged. I talk back because we need help and not just lip service around election time or after a tragedy.
I talk back because we ask for help but what we usually get are bloodied fingers from the sharp, broken fragments of a failed mental health system we’re forced to piece together with our bare hands.
How You Can Help
I am a proud member of the National Shattering Silence Coalition and very much support their programs and platforms. The Calls to Action section of their website offers some great ways you can help support our cause.
Please also continue to keep our family and the Aguerryberry family in your thoughts and prayers.
Why do you talk back?
Please share your stories with us. Our stories must be shared with the general public who doesn't have a clue what we are going through. They do not know how incredibly broken our system of care for those with serious brain illnesses is. They have no clue that we are unable to get help for our loved ones. They have no clue that, instead of receiving treatment for their illnesses, our loved ones are abandoned, criminalized, and left to rot in jail or die in our streets. It's up to us to speak out and inspire change.
They must also be shared with Congress, our President, and anyone with the power to bring about the change we so desperately need.
Submit your stories to email@example.com. Please feel free to write them or, better yet, record an audio only if you wish to remain anonymous, or a video, if you are OK with us using your name.
Coordinator & Co-Chair Steering Committee, NSSC
By Lynn Nanos, Licensed Independent Clinical Social Worker
Author, Breakdown: A Clinician's Experience in a Broken System of Emergency Psychiatry
As a member of the National Shattering Silence Coalition, I along with family members and friends of seriously mentally ill individuals, advocate to improve their lives. One of our goals is to persuade the federal government to abolish the Social Security Administration’s Medicaid Institutions for Mental Diseases (IMD) Exclusion law. The IMD Exclusion prohibits the federal government from financially reimbursing Medicaid for inpatient psychiatric facilities with more than sixteen beds for patients aged twenty-one (and in certain circumstances twenty-two) to sixty-four years old.
My newly published book, Breakdown: A Clinician's Experience in a Broken System of Emergency Psychiatry, involves research weaved into clinical vignettes, where I state that plans to eliminate beds and hospitals, referred to as deinstitutionalization, took root in the 1940s. The government aimed to minimize the financial cost of treating the mentally ill population, considering that institutional care was more expensive than outpatient care. In 1954, the first antipsychotic medication, Thorazine, was created to reduce psychosis and agitation. Mental health professionals and government officials expected that lobotomies, electroconvulsive therapy, and medication would allow mentally ill patients to reside outside of hospitals by reducing their symptoms safely. As a result, vast numbers of seriously mentally ill patients were discharged, and outpatient treatment options were increased.
The IMD Exclusion must be repealed because it is the main reason that inpatient psychiatric hospitals have eliminated so many beds. Since a variety of modern treatment options have made it possible for many mentally ill people to safely live outside of the hospital, we are not requesting a return to the bed-capacity of the 1950s. But the pendulum has swung too far to the other extreme. There is a severe shortage of inpatient beds. According to countless sources, the number of inpatient beds in the United States has dropped by at least 96 percent since the 1950s, despite an increase in the population.
In the 1950s, state hospitals provided respite – largely housing and asylum – for the mentally ill population. The states primarily funded these hospitals through taxes until the Medicaid program was created in 1965. The federal government didn’t want to abolish the means of funding, thus preferred to deny federal funding to Medicaid. I suspect that the main motivation behind the IMD Exclusion was to expand treatment outside of hospitals. This indeed was a main reason that the IMD Exclusion was imposed.
When Medicaid didn’t have enough money to fund hospitals, state governments eliminated inpatient beds or closed hospitals. As most mental health treatment is funded by Medicaid, the IMD Exclusion is a barrier to Medicaid recipients accessing state-funded inpatient beds. Today, the lack of inpatient psychiatric beds has shifted the responsibility of “housing/asylum” of the mentally ill from state hospitals to our jails and prisons.
Consequences mount when there are not enough inpatient beds to meet the demands for care. Newspaper accounts of these horrific consequences that include suicide or homicide are happening far too often and demonstrate the necessity for long term hospitalizations to restore our most severely mentally ill whose brain disorders prevent them from recognizing their need for treatment. We must stop the criminalization, inappropriate waiting periods for inpatient admission, and excessive instances of premature discharges from hospitals.
All states share the same barrier to care – a shortage of long-term inpatient beds. Patients in Massachusetts who need long-term and state-funded inpatient care must be transferred there from non-state-funded inpatient units. In other words, they cannot go directly to state-funded inpatient units directly from emergency services. Patients too often languish on other types of inpatient units for months before getting transferred to state-funded inpatient units because of the shortage of inpatient beds. This makes inpatient beds less accessible to patients in emergency services who need this type of care. When admissions departments of inpatient units expect that emergency patients will be “stuck” on their inpatient units for months, they encounter no legal consequence of denying them care.
In Breakdown, I report about Gary, who needs to be involuntarily transferred to the hospital (referred to as “Section 12” in Massachusetts) because he is at risk of harming others due to his psychosis. Any attempt at persuading him to voluntarily seek treatment doesn’t help because he doesn’t understand that he’s ill and needs medication. This is referred to as anosognosia and is the most common reason that people with schizophrenia and bipolar disorder refuse to accept treatment.
Out of his view, I contact the police about the need for help to enforce a Section 12. I fax the Section 12 to them. They are familiar with Gary’s history of violence. Though I did not ask for any number of officers to assist me, three officers arrive. They verbally persuade him to cooperate with ambulance staff members, which he does. It must be the uniforms and guns that again prevent aggression or elopement. Approximately six days later, when I am at a hospital emergency department to evaluate another patient, the medical doctor asks me if there’s any hope of securing a bed for Gary, since he has been there for six days. The patients who are most likely to become violent await admission to inpatient psychiatric units for days and even months at hospital emergency departments due to the shortage of inpatient beds and to discrimination. I remind the doctor about the shortage of inpatient beds, along with Gary’s history of violence, and tell him that both factors inevitably extend the waiting period.
Rather than doing the right thing and waiting for an inpatient bed, a physician at the hospital discharged him to the streets. On the following day, I reassess him at the hospital emergency department after police brought him there. His aunt called the police because he threatened to assault her. The IMD Exclusion contributes to patients repeatedly presenting to emergency services, known as the “revolving door.”
Psychiatric patients in hospital emergency departments wait more than three times longer for inpatient psychiatric beds than medical patients wait for inpatient medical beds. This is unacceptable and contributes to poor treatment outcomes because the emergency setting is highly limited in its ability to provide psychiatric care. Hospital emergency departments cannot act as psychiatrists would.
The Department of Health and Human Services allows states to apply for waivers (which can also be referred to as “demonstrations” because states design experimental programs) of Section 1115(a) of the Social Security Act, that, if approved, can boost Medicaid payment to hospitals. The Centers for Medicare and Medicaid Services can issue such waivers that would allow states to waive exclusions. Waivers must be budget neutral. This means that the waiver “does not result in Medicaid costs to the federal government that are greater than what the federal government’s Medicaid costs would likely have been absent the demonstration.” This doesn’t seem like much Medicaid expansion to me. Besides, some states have opted out of this option offered by the federal government all together.
The temporary lifting of the IMD exclusion just became less difficult for states. On November 13, 2018, Secretary Alex M. Azar of the Department of Health and Human Services – Centers for Medicare & Medicaid Services sent letters to state Medicaid directors that instructed them on how to apply for waivers. The letter “outlines both existing and new opportunities for states to design innovative service delivery systems for adults with serious mental illness (SMI) and children with serious emotional disturbance (SED). The letter includes a new opportunity for states to receive authority to pay for short-term residential treatment services in an institution for mental disease (IMD) for these patients.” If waivers get approved, federal funds would improve unstable patients’ access to inpatient units.
But, this is a small step toward a lot more work that must be done. The new waivers allow for only a 30-day inpatient stay; states are not mandated to apply for these waivers; and waivers must be budget neutral. We urge everyone to send letters to their Medicaid directors asking that they take advantage of this new opportunity. More importantly than any monetary cost, the human cost of homelessness, incarceration, and violence would decline with increased use of these waivers.
Although this latest update is a step in the right direction, it’s not enough. The loopholes and barriers to states’ ability to waive the Exclusion render it best that the law be repealed on a federal level instead. We urge the government to repeal the IMD Exclusion through legislative and regulatory actions. Our seriously mentally ill loved ones and patients need this because it discriminates against the seriously mentally ill population who are more likely than the rest of the mentally ill population to need government-funded inpatient care.
 Sandoe, Emma. "Bill of Health: What Is the IMD Exclusion That Everyone Is Talking About?" Harvard Law School: The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics (blog), February 27, 2016. http://bit.ly/2Rv62b0.
 Melecki, Sarah, and Katie Weider. "The Medicaid Institution for Mental Diseases (IMD) Exclusion." Lecture, Washington, DC, March 31, 2016.
 United States. Social Security Administration. Compilation of the Social Security Laws. Accessed November 4, 2018. https://bit.ly/2y71e2I; Legal Action Center. The Medicaid IMD Exclusion: An Overview and Opportunities for Reform. Accessed November 4, 2018. https://bit.ly/2eWz7uJ; “The Medicaid IMD Exclusion and Mental Illness Discrimination.” Arlington: Treatment Advocacy Center. 2016. https://bit.ly/2w9BAx5.
 "Behavioral Health Services." Medicaid.gov. Accessed November 4, 2018. http://bit.ly/2zpVXES.
 Nicks, B. A., and D. M. Manthey. "The Impact of Psychiatric Patient Boarding in Emergency Departments." Emergency Medicine International 2012 (2012): 1-5. doi:10.1155/2012/360308.
 "State Waivers List." Medicaid Home. Accessed November 07, 2018. http://bit.ly/2qvcjbj.
 Hill, Timothy B. Medicaid. August 22, 2018. http://bit.ly/2PaTfOe. Letter to the State Medicaid Director from the Department of Health & Human Services.
 "Press Release CMS Announces New Medicaid Demonstration Opportunity to Expand Mental Health Treatment Services." CMS.gov Centers for Medicare & Medicaid Services. Accessed December 02, 2018. https://go.cms.gov/2U5Mn3v.
Welcome to our blog about what’s wrong with the mental healthcare system. This blog is written by members of the National Shattering Silence Coalition (NSSC), a nonpartisan coalition of diverse individuals and organizations who are uniting with one common goal. We want to ensure that mental illness, health, and criminal justice systems count those with serious mental illness (SMI), serious emotional disturbance (SED), and their families in all federal, state, and local policy reforms. We are voices for the 10 million adults and 7 million children living with—and dying too young from—serious mental illness.
Most of us have lived experience dealing with a loved one battling an SMI/SED. A number of us work in the field of mental health in some capacity. Others are involved because they passionately support our mission. All of us are united through our shared pain and our determination to improve the lives of those who have been diagnosed with a serious brain disorder.
NSSC members are banding together to support the implementation of mental health reform. We are a grass-roots coalition lobbying for a health care system that is long overdue for a major overhaul. Together we can revamp the entire protocol for obtaining professional help.
We want to begin with mandated Crisis Intervention Training for all first responders, police, and ambulance crew, so they can safely transport our family members to emergency departments, replacing today's typical scenario of a distressed, handcuffed family member forced into the back of a squad car.
Another critical reform we need is to eliminate the Institution for Mental Disease (IMD) exclusion to ensure there will actually be a safe place to take our family members when necessary. We need to eliminate lengthy waits for available beds, and eliminate the early release of unstable patients. These disruptions in treatment are caused by bed shortages and also by the IMD exclusion, a Medicaid regulation that prevents reimbursement for stays over 15 days.
What is the IMD Exclusion, and why is it a problem?
One of the greatest hurdles preventing Medicaid patients from accessing treatment and a greater continuity of care is the IMD exclusion, Section 1905(a)(B) of the Social Security Act. An IMD is defined as a hospital nursing facility or other institution with more than 16 beds that is engaged in providing diagnosis, treatment, or care of persons with mental diseases. The IMD exclusion prohibits payments with respect to care or services for any individual who has not attained 65 years of age and who is a patient in an institution for mental diseases, except for inpatient psychiatric hospital services for individuals under age 21.
A Medicaid patient in a state with managed care will have access to an IMD, while a similar patient, in a state that utilizes fee-for-service, will not. Medicaid, since its beginning, has prohibited federal funding from going to states to pay for treatment of mental illness or substance abuse in IMDs.
The IMD exclusion has been part of the Medicaid program since Medicaid’s enactment in 1965, and while Congress has had the opportunity on numerous occasions to amend or repeal the exclusion, it has remained largely intact. In addition, the regulations governing the IMD exclusion have not been updated since 1988.
An NSSC member's 24-year-old son, diagnosed with schizophrenia, awaits admittance to Park Royal Hospital in Fort Myers, Florida.
When Lynne Warberg's son, diagnosed with schizophrenia, became psychotic despite the medications he was taking, the family tried to get him into a hospital. The injectable antipsychotic he was prescribed had lost efficacy, resulting in extreme psychosis. Two weeks earlier, he had been “Baker Acted” to a Crisis Intervention Unit, but he was released after only three days, even though he was still very sick. Such quick discharges are common in a system where institutional beds are in short supply due to the IMD exclusion. His continuous manic behavior caused his parents to seek immediate care for him. He was admitted to Park Royal, and his medications were changed. However, on the 15th day, he was released due to an IMD-related Medicaid rule that limits reimbursement to hospital stays of 15 days per month. He was not stable because psychiatric medications, such as serotonin-dopamine antagonist antipsychotics, take 6 - 12 weeks to reach full effect, and he could not be left alone safely. His mother was fired from her managerial position when she requested a Family Medical Leave in order to care for him.
There are more than 10 million adults living with SMI in America. The IMD exclusion has been used to discriminate against this population for 53 years. These illnesses are medical diseases of the brain and must be treated with the same care and attention as any other medical disease of the brain, such as Alzheimer’s or Parkinson’s Disease.
The IMD exclusion for mental illness has unethical and unjust consequences—death while incarcerated. We oppose having our loved ones jailed due to uncontrollable, and often misunderstood, behaviors from their illnesses. Jails and prisons have become our new asylums. Inmates face overcrowded cells, lack of much-needed treatment, unnecessary solitary confinement (which has been proven to exacerbate negative mental health symptoms), taunting and bullying from staff, a risk of death from maltreatment or violence, and overall inhumane conditions. Currently an estimated 325,000 people diagnosed with an SMI live on the streets, and 400,000 reside in our prison population.
In the NSSC’s position statement, Point of Unity #4 is “End Discrimination.” We support the full repeal of the IMD exclusion, and call for parity and a right to treatment under Medicaid/Medicare. This addresses the immediate need for federal assistance to provide medically necessary care and services to individuals between the ages of 22 and 64, who are patients in institutions or facilities specializing in the care and treatment of psychiatric disorders (IMDs).
For more information on why we are asking for a full repeal of the IMD exclusion, please download our position statement at http://nationalshatteringsilencecoalition.org/positions.
The National Shattering Silence Coalition is determined to shatter the silent epidemic of untreated, or inadequately treated, serious mental illnesses (SMIs) in adults, and serious emotional disturbances (SEDs) in children. The NSSC speaks up for these 17 million individuals--the 4% who suffer from an SMI, and the 10% who suffer from an SED--along with their shattered families. Please join us today, and support the long-awaited implementation of mental health reform, by visiting http://www.nationalshatteringsilencecoalition.org/join.