Krewe: A quiet calamity, the crumbling mental health care system in Louisiana

Editor’s Note: ViaNolaVie, Krewe Magazine, and Bard Early College New Orleans partnered together in an effort to bring voices of the youth into the journalistic realm. Under the guidance of professors Kelley Crawford (Bard Early College and Tulane University) and Michael Luke (Tulane University),  a composition course was manifested where students write non-fiction, New Orleans-based pieces, resulting in a printed publication (Krewe magazine) designed and published by Southern Letterpress. We will be publishing each student’s piece that was chosen for the magazine.

Charity Hospital. (Photo from: Wiki Media Commons)

Since Katrina in 2005, New Orleans has been struggling to recover its preexisting care programs and to provide aid for post-traumatic stress symptoms of those who witnessed the tragedies the storm brought. Mental health beds dropped from 487 before the storm to an alarming 190, many already filled with institutionalized patients with mental illness. A city that once had nearly 200 practicing psychiatrists came out of the storm with a mere 20. Due to financial cuts, psychiatric hospital closures, and mismanaged spending, the mental health system in the state of Louisiana has collapsed. Jails and nursing homes are filled to the brim with the mentally ill, at the taxpayer’s expense. Besides the legal issues and budgets being chipped away over the last decade, there are several reasons why people aren’t actively seeking care.

“This is a national epidemic. We’re not going to solve this through the health or criminal justice system alone. We need everyone working together,“ says Janet Hays, the founder of Healing Minds NOLA. Healing minds is a nonprofit that works to bring residents, families, and stakeholders together to explore alternatives to incarceration, homelessness, and death for those who suffer from the myriad forms of mental illnesses. Hays is a human rights advocate by nature and became a dedicated community organizer after Hurricane Katrina in 2005. Her efforts to help build a full continuum of psychiatric care include adaptively reusing Charity Hospital as a ‘One-Stop-Shop’ mental healthcare and research center of excellence.

“My brother never committed any violent crimes and had only been arrested for minor offenses, such as loitering or trespassing. He stayed under the bridge so he would go outside of stores to ask for money, which would lead to his dozens of arrests. Because his treatment has not been adequate or continuous (he only gets the treatment he needs when he is committed) his condition is deteriorating both mentally and physically,” shares Alisha Williams, a participant of Healing Minds NOLA and Policy Assistant at the Advocacy Center. She is a family member of an individual with mental illness and a coexisting substance abuse disorder.

The Advocacy Center is a nonprofit legal services agency that advocates for and represents individuals with disabilities to work and live freely in the community through technical assistance, training, avocation, legal representation, and policy changes. Williams has experienced the neglect of the mental health care system first hand when her brother, who has bipolar disorder, paranoid schizophrenia, and substance abuse issues, was solely viewed as having a drug problem. He was only properly diagnosed when he was in his mid-to-late twenties, after being in the prison system several times.

According to data from the Substance Abuse and Mental Health Services Administration (SAMHSA), an estimated 650,000 adults and 245,000 children will experience a diagnosable mental disorder in a given year. That’s nearly 1 in 5 people. Because of this, the issues of mental health education, funding, and legislature have been increasingly gaining attention. Louisiana ranks 45th in the United States for access to mental health care. Mental health spending per Louisiana resident shrank to from $74 in 2008 to $56 in 2013, when Governor Bobby Jindal took office. Under his administration, New Orleans Adolescent Hospital was closed in 2009, and after promising inpatient services would continue, Southeast Louisiana State Hospital was also shut down in 2012. Although recent progress has been made, there continue to be problems. In 2016, the state’s Medicaid program was expanded, bringing health insurance coverage for mental health care to more than 430,000 Louisianans in the first year alone. The problem with the program is that health providers are refusing to accept Medicaid patients due to their low reimbursement rates, which limit patient care options and make it difficult for doctors to maintain a practice.

Mental illness is not homogeneous. A necessary component of understanding this is that a distinction needs to be made between mental health (such as divorce counseling, minor anxiety, situational depression, ADHD) and serious mental illness (such as bipolar disorder, schizophrenia, psychosis). Serious mental illness is defined as a mental, behavioral, or emotional disorder resulting in a serious functional impairment, which substantially interferes with or limits one or more major life activities.

“We need to be careful about where we spend our money. We don’t have unlimited mental health dollars so we need to make sure that we’re triaging dollars so that they’re going to where they’re most needed- the most dollars should be going to the people that need the most help,” Janet Hays argues.

“I think that we need to not focus as much on mental health and more on severe mental illness. These two things are often grouped together. If we continue to do this, once again individuals with mental illness are done a disservice. Because someone has anxiety and PMS does not mean they should not get help, it just means that the buckets of resources and money should be coming from other sources,” Williams adds.

Janet describes a condition that often comes up in her field called Anosognosia, which is a deficit of self-awareness where a person with some disability seems completely unaware of its existence. “The population of people with serious mental illness who aren’t seeking treatment are not seeking treatment because they don’t know that they have a mental illness,” she says. Anosognosia is the single largest reason why those with schizophrenia or bipolar disorder refuse medications or do not seek treatment.

“…individuals with mental illness may often not seek help for their illness because the illness is in fact not an illness in their mind. The diagnosis required the person to spend time with licensed professionals for a longer period of time than what Medicaid is willing to pay for. For example, take someone with bipolar disorder. They may not have signs or symptoms for the majority of a year, without continuation of services this person’s disability may not be adequately addressed and treated,” adds Ms. Williams.

Another major reason for people not getting treatment and denying that they have a mental illness is due to the lack of education on what illness really is. “If you look at a brain scan with someone with mental illness you can see it as a disease,” according to Hays. Some communities don’t treat serious mental illnesses because they see it as a behavioral problem and fear being locked up, and will resort to putting their kids in the military to “straighten them out.”

People also don’t want to admit that they have a mental illness because they fear being discriminated against, especially when they’re looking for work.  “With a history of mistreatment and abuse in mental health care, there’s a sort of conspiracy theory mentality that people are going to be locked up and experimented on.” Unfortunately, this stigma is a large reason that people don’t seek treatment. Both women argue that minority communities are most affected by these beliefs, and because they are already marginalized in many aspects, they often don’t get the treatment they deserve. For example, “their substance use is often looked at as extreme drug use rather than self-medication,” Williams offers. Likewise, individuals from minority communities are criminalized more harshly so instead of hospitals they are often sent to jails.

In fact, many people suffering from mental illness are incarcerated or placed in nursing homes due to the state’s lack of support systems. The Treatment Advocacy Center estimates that in the U.S. 383,000 people with mental illness are inmates in jails and prisons; 169,000 people with mental illness are homeless. Forensic hospitals are less restrictive than jails, yet these facts remain. “I truly believe that if somebody has a mental illness they should never be in a jail or a prison. They should be immediately diverted to wherever they need to go to get good treatment regardless of the crime,” says Hays. Another problem she raises is that when those without mental illnesses develop one while incarcerated, they need access to treatment at post-booking.

According to the Justice Department, 14.5 percent of people in Louisiana nursing homes have a serious mental illness. At least eight nursing homes in Louisiana had such high volumes of mentally ill patients that communities began identifying them as psychiatric facilities. The Louisiana Department of Health agreed to a five-year plan for community-based mental health services after the U.S. Department of Justice found 3,800 mentally ill Louisianans being warehoused in nursing homes and labeled it a Civil Rights violation. The state’s plan is to expand community-based services like case management, mobile crisis, assertive community treatment and supported housing. One non-permanent system that’s in the process of being expanded is recovery housing. The idea is to get people who can live safely in the community on their own without supervision into a stabilizing, step down kind of structure. Once they graduate out of that, they most likely can own their own home or rent their own apartment. Although living on their own is the goal, the hard truth is that seriously mentally ill people tend not to do well in isolation.

An anonymous source talks about her experience with a loved one who suffers from mental illness, who has been in an isolated apartment on his own, waiting for a case manager to come and check on him a couple times a day or week. “He stopped shaving and had less frequent showers. He was so lost in random disconnected thoughts. If there isn’t constantly activity going on around him, he’ll stay in bed for three months,” she explains. That’s often the case with people with a severe mental illness. Frequent activity and distraction are essential, which is why group homes are so effective. People have a more structured environment, activity going on, and peers and counselors to talk to. Because of this, a better solution might be for the state to look into funding group homes and assisted outpatient treatment over recovery housing programs, which may not work as well for individuals who have trouble functioning on their own. Hays raises an important point that “We superimpose our own values and solutions about what would work for us, as people who are well onto people who are sick.”

There are a plethora of hygiene issues and unhealthy habits that come with mental illness. Assisted outpatient treatment (AOT) is a court-supervised treatment within the community that provides the mentally ill with the wraparound services and structure they need to help them succeed in the community of their own. In order to be a candidate for AOT, a person must meet specific criteria such as a repetitive history of hospitalizations or arrests. According to the Treatment Advocacy Center, AOT laws have been shown to reduce hospitalization, arrest and incarceration, homelessness, victimization, and also to prevent violent acts associated with mental illness, including suicide and violence against others. As of now, five states still have yet to permit the use of this treatment: Connecticut, New Mexico, Nevada, Maryland, and Tennessee. Habits take a long time to change. But once a person has changed their habits, typically they want to maintain those habits and don’t want to revert to the life they had before. Assisted outpatient treatment helps people change these habits and lead a better life for themselves and ultimately those around them. “The truth is that it’s a process. People can’t go straight to living on their own, they need a structured transition,” Hays insists.

“My personal experience is as a caregiver to my husband whose main diagnosis is serious clinical depression. He tried for years to manage his symptoms “naturally” and through smoking weed. After getting married (which requires a certain amount of responsibility), he began cycling downward. He got into witchcraft somehow and was staying out late at night. I became concerned when he started posting on Facebook about a woman who had drilled holes in her head to let the spirits out,” an anonymous source shares, “He is a danger to himself as was his sister who had untreated schizophrenia and took her own life during the 2 month period she had to wait to see a psychiatrist.”

Janet concludes with “The reality is, if we’re going to fix our broken mental health system, we’re not going to fix it by waiting around for the government’s money.” She then continues, saying that we need to get creative about this, which is precisely why she opens her nonprofit to the public. “Family members, the Advocacy Center, State Representatives, attorneys, agencies, hospitals; all coming together (without getting paid) for the same reason – to improve the health and public safety of those who suffer mental illness.” If we shift to the community-based care and involvement that Hays encourages and works so hard to achieve, there’s a chance serious change will happen.

Williams concludes our conversation with an important point:

“Because funding is often a policy issue, we need to remind our policymakers that they may not see the faces of individuals living with mental illness, but they exist and part of the reason they cannot be at the state capitol is because they cannot function in society as normal with the lack of resources they have. They must realize just because they are not in droves lined up to get policy change does not mean policies don’t need to be changed. It instead means that these are the individuals that we must fight for the most.”

Although these problems do exist, there is hope in the fact that the state has taken some recent actions to better the system. The question is whether or not this kind of action will continue. In 2008, Bernel Johnson, a man with schizophrenia whose family tried for years to get him the treatment he needed, shot and killed NOPD Officer Nicola Cotton after attacking her and wrestling away her gun. After Bernel was found incompetent to stand trial and placed in a psychiatric hospital, a new law was created that makes it much easier for those with severe mental illness to obtain court-ordered outpatient treatment in Louisiana. Nicola’s Law, named after the slain officer, places people into treatment before they become a threat to themselves or others. This treatment reduces hospital stays, jail time, homelessness, and violence. It’s a model that works, a step forward, an example of something the state undoubtedly can use more of. The more educated the public becomes about mental illness and the more we continue to remove the stigmas around it, we can only begin to hope for change if we involve the community and ensure services are accessible and available to all impacted people.