Supporting a Family Member with Serious Mental Illness Is Harder Than It Should Be
Diagnosed with bipolar disorder as a teenager, Eric Smith spent nearly four years cycling in and out of hospitals and jail before entering an assisted outpatient treatment (AOT) program—one that he says held him accountable 24-7. For Smith, it was this intensive attention that made all the difference. After successfully completing AOT, he went on to graduate magna cum laude with a degree in psychology from the University of Texas at San Antonio and earn a masters of social work degree. He is now a professional mental health advocate.
Halfway across the country, the Stringer family is in the midst of a very different, but related, situation. Martha Stringer’s daughter Kim has struggled with severe mental illness (SMI) since childhood. “We used to say she never grew out of her terrible twos,” Stringer says. “She always had some things that, behaviorally, were puzzling—but the real concern came after she turned 18.” Kim had been diagnosed with bipolar disorder in her late teens; an illness characterized by symptoms like severe mood disturbances and periodic catatonia, which can manifest as anything from agitation to immobility. “From the time she was about 23 up until now, it's been seven very difficult years of watching her spiral in some way, shape, or form and have encounters with the law and hospitalizations—and yet really no meaningful treatment for any significant period of time,” Stringer says.
According to the National Institute of Mental Health, an estimated 14.2 million adults (or 5 percent of all U.S. adults) suffer from some form of serious mental illness, like bipolar disorder or schizophrenia. While there are programs, medications, and services available to manage and treat these chronic psychological conditions, accessing those resources can be difficult due to any number of reasons—some of them prohibitive.
The symptoms of SMI vary significantly, but the effects can be devastating across the board. Those with schizophrenia, for example, may experience psychotic symptoms, including hallucination and delusions, while those with bipolar disorder may swing from engaging in risky, reckless behaviors like excessive drinking and spending to having little interest in just about anything. Though there are medications to manage the symptoms of SMIs, these treatments aren’t perfect or without significant side effects, including digestive issues, weight gain, liver damage, and more. Another major issue associated with SMI is a condition called anosognosia, a common symptom that means a person is unaware of their own illness or can’t perceive it accurately. According to the nonprofit organization Treatment Advocacy Center, anosognosia is the leading reason individuals with psychiatric disorders do not take prescribed medications.
“Anosognosia is not a legal barrier but a practical barrier to treatment for people with schizophrenia and bipolar disorder,” says Treatment Advocacy Center’s director of communications, Geoffrey W. Melada. “It can prevent them from voluntarily seeking treatment, keeping them a prisoner to delusion. It is the ultimate deprivation of civil liberties to keep someone in psychosis.”
According to Melada, the lack of societal awareness around anosognosia is just one contributing factor to a nationwide mental health crisis that leaves individuals with SMI—and their family members—cycling between the criminal system and psychiatric hospitals, without ever receiving adequate, effective care.
Founded in 1998, Treatment Advocacy Center is dedicated to removing barriers to care for SMI by promoting laws, policies, and practices that support efficient and effective treatment and research. While the organization covers a lot of ground in its fight to increase treatment for individuals with SMI, one of its main objectives is to promote the legalization and implementation of AOT programs, which are designed to prevent repeat hospitalizations, incarcerations, and homelessness.
“AOT is the practice of providing outpatient treatment under civil court order to individuals with severe mental illness who have demonstrated difficulty engaging with treatment voluntarily,” Melada says. “When it is properly implemented and adequately funded, AOT can dramatically reduce hospitalization, criminalization, and other adverse outcomes.”
The word voluntary may raise red flags for anyone exclusively familiar with the issue of conservatorship abuse, a topic that recently made headlines in light of the high-profile Britney Spears case. But Treatment Advocacy Center’s representatives say the goal of AOT programs is not to restrict or remove autonomy from individuals with SMI, but rather to engage them in their treatment so they can take ownership of their future and become active participants in their lives.
“There are some who oppose AOT, saying that individuals are being coerced into participating in treatment,” says Treatment Advocacy Center’s implementation specialist, Betsy Johnson. “However, it is the very existence of the court order that makes AOT effective. The ‘black robe effect’ not only gets the attention of the person who otherwise would not engage but also helps to ensure that the treatment team remains vigilant in their delivery of court-ordered services. Eventually, the person comes to realize that they are no longer living in a constant state of turmoil, and what was once involuntary participation becomes voluntary.” According to one randomized controlled trial of outpatient commitment in North Carolina, a court order alone can’t serve as a substitute for effective treatment—but when combined with relatively intensive community treatment, it can improve treatment outcomes.
The consequences many individuals with SMI face—jail time, psychiatric hospitalization, etc.—are what Melada calls “the revolving door,” the unfortunate and chronic cycle many individuals with untreated SMI find themselves in due to a lack of universal approaches for treating people in need. According to Treatment Advocacy Center’s 2020 “Grading the States” analysis of involuntary psychiatric treatment laws, “the United States is effectively running 50 different experiments, with no two states taking the same approach.” The organization believes that AOT can go a long way in preventing entry into the revolving door, and research suggests the strategy works: New York, which was the first state in the country to adopt AOT in 1999, has seen a 77 percent decrease in the incidence of psychiatric hospitalizations for current AOT participants compared to the three-year period prior to joining AOT, an 83 percent reduction in arrests, and an 87 percent decline in incarceration rates. There has also been a decrease in homelessness, nationwide, among AOT program participants, and AOT has been associated with a reduction in the average cost per person of mental health services, medical treatment, and criminal justice involvement.
“AOT at its core is a legal procedure to mandate outpatient mental health treatment for vulnerable individuals,” Melada says. “The program is a collaborative effort by the court system and the treatment system—all those professionals working in concert to actively identify the people who need it, and then ensure that those patients receive high-quality services and then transition them back to voluntary care when appropriate.”
The nuts and bolts of AOT vary from case to case, but one defining characteristic is that it’s a tool of civil courts; it’s in no way associated with the criminal court system. Typically, in the 47 states where AOT is currently authorized, a patient is referred to the program for consideration upon discharge from a hospital or jail. (It is, however, important to note that while AOT has been authorized, not all those states are implementing it yet.) According to Johnson, successful AOT programs require regular involvement from a long list of stakeholders, including a judge, a public mental health authority, community mental health providers, law enforcement, and more. “The makeup of the treatment team varies depending on the needs of the individual,” Johnson says. “Not only does AOT improve lives and save money, but it also frees up much-needed space in psychiatric hospitals by reducing the number of people who cycle in and out of scarce beds.”
While advocating for AOT programs and raising awareness around anosognosia are two of Treatment Advocacy Center’s main objectives, they’re not the only ones. The organization is also dedicated to repealing what it calls “an outdated, discriminatory federal rule”: the Medicaid Instititutions for Mental Disease (IMD) exclusion, which prohibits low-income individuals from using Medicaid to receive psychiatric care in a treatment facility with more than 16 beds. “Maybe this law served a beneficial purpose in the 1960s, when it was created to try to reform the mental asylums at the time,” Melada says of the rule (there is current legislation pending in Congress to repeal it). “But this anachronistic law is no longer needed, and we have devoted a great deal of time and energy toward advocating for its full repeal.”
Until these kinds of systemic issues take place, families like the Stringers may continue to stand by helplessly, watching their loved ones succumb to the “revolving door.” The day Stringer agrees to an interview for this article happens to be her daughter’s 30th birthday. Kim is spending it back in a psychiatric hospital; due to her anosognosia, she has once again discontinued her medication. “My daughter unfortunately has very little insight into her illness, and that makes her resistant to accepting treatment for it and very hard to get her to adhere to treatment, medication, all the things she would benefit from,” Stringer says. While AOT has already been legalized in their home state of Pennsylvania, their county has not implemented it, an issue she says often comes down to funding.
Stringer doesn’t know what the future holds for her daughter, but she is determined to continue advocating on behalf of Treatment Advocacy Center and believes the organization’s work is invaluable in effecting much-needed change for individuals and families struggling with SMI. “It’s a complicated decision to tell your family member’s story,” she says. “But it came down to this: Even if I wasn't able to help my own daughter at some level, I wanted to help other moms dealing with this situation. And if telling our story could help that or humanize it, then I felt that was important to do.”
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