Federally Sanctioned Discrimination Against Those Most Ill Must End

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The IMD Exclusion must be repealed because it is the main reason that inpatient psychiatric hospitals have eliminated so many beds.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.[1] 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.[2]  

When Medicaid didn’t have enough money to fund hospitals, state governments eliminated inpatient beds or closed hospitals.[3] As most mental health treatment is funded by Medicaid,[4] 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.[5] 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.[6] 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.”[7] 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.”[8] 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.


References:
[1] 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.

[2] Melecki, Sarah, and Katie Weider. "The Medicaid Institution for Mental Diseases (IMD) Exclusion." Lecture, Washington, DC, March 31, 2016.

[3] 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.

[4] "Behavioral Health Services." Medicaid.gov. Accessed November 4, 2018. http://bit.ly/2zpVXES.

[5] 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.

[6] "State Waivers List." Medicaid Home. Accessed November 07, 2018. http://bit.ly/2qvcjbj.

[7] Hill, Timothy B. Medicaid. August 22, 2018. http://bit.ly/2PaTfOe. Letter to the State Medicaid Director from the Department of Health & Human Services.

[8] "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.