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 through hospitals and prison before entering an Assisted Outpatient Treatment (AOT) program – a program he says held him accountable 24/7. For Smith, it was this intensive attention that made all the difference. After successfully completing the AOT, he earned a magna cum laude degree in psychology from the University of Texas at San Antonio and earned a master’s degree in social work. He is now a professional mental health advocate.

Across the country, the Stringer family is in the midst of a very different, yet related, situation. Martha Stringer’s daughter, Kim, has struggled with severe mental illness (SMI) since childhood. “We used to say she never got out of her terrible twos,” Stringer says. “She always had things that behaviorally were confusing, but the real concern came after she turned 18.” Kim had been diagnosed with bipolar disorder in her late teens; a disease characterized by symptoms such as severe mood swings and periodic catatonia, which can manifest as anything from restlessness to immobility. “From when she was about 23 until now, it has been a very difficult seven years of watching her spiral one way or another and having encounters with the law and hospitalizations – and yet really no meaningful processing for a significant period of time,” Stringer says.

According to the National Institute of Mental Health, approximately 14.2 million adults (or 5% of all American adults) suffer from some form of serious mental illness, such as bipolar disorder or schizophrenia. While there are programs, medications, and services available to manage and treat these chronic psychological disorders, accessing these resources can be difficult for a number of reasons, some of which are prohibitive.

Symptoms of IMS vary greatly, but the effects can be devastating on all levels. People with schizophrenia, for example, can experience psychotic symptoms, including hallucinations and delusions, while those with bipolar disorder can go from risky and reckless behaviors like binge drinking and spending to a little interest in just about anything. Although there are medications to manage the symptoms of MMS, these treatments are not perfect or without significant side effects including digestive issues, weight gain, liver damage, etc. Another major problem associated with IMS is a condition called anosognosia, a common symptom that means a person is unaware of their own illness or cannot accurately perceive it. According to the non-profit organization Treatment Advocacy Center, anosognosia is the number one reason people with psychiatric disorders don’t 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 communications director Geoffrey W. Melada. “It can prevent them from voluntarily seeking treatment, keeping them prisoners of illusion. It is the ultimate deprivation of civil liberties to keep someone in psychosis.

According to Melada, society’s lack of awareness of anosognosia is just one of the factors contributing to a nationwide mental health crisis that is leaving people with IMS – and their family members – struggling. from the penal system to psychiatric hospitals, without ever receiving adequate and effective care.

Founded in 1998, the Treatment Advocacy Center is dedicated to removing barriers to care for MMS 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 people with IMS, one of its main goals is to promote the legalization and implementation of AOT programs, which are designed to prevent hospitalizations. repeated, incarceration and homelessness.

“AOT is the practice of providing civil court-ordered outpatient treatment to people with serious mental illness who have demonstrated difficulty in voluntarily engaging in treatment,” Melada explains. “When properly implemented and adequately funded, AOT can significantly reduce hospitalization, criminalization, and other adverse outcomes.”

Word voluntary may raise red flags for anyone exclusively familiar with the issue of guardianship abuse, a topic that has recently made headlines in light of the high-profile Britney Spears case. But representatives of the Treatment Advocacy Center say the goal of AOT programs is not to restrict or take away the autonomy of people with IMS, but rather to involve them in their treatment so they can take ownership of their future and become active participants in their lives.

“Some oppose AOT, saying individuals are coerced into participating in treatment,” says Betsy Johnson, implementation specialist at the Treatment Advocacy Center. “However, it is the very existence of the court order that makes AOT effective. The ‘black dress effect’ not only attracts the attention of the person who otherwise would not engage , but also helps to ensure that the treatment team remains vigilant in providing court-ordered services.Eventually, the person realizes that they no longer live in a constant state of turmoil, and what was once involuntary participation becomes voluntary According to a randomized controlled trial of outpatient engagement in North Carolina, a court order alone cannot replace effective treatment, but when combined with relatively intensive community treatment, it does box improve treatment results.

The consequences that many people with IMS face – prison sentences, psychiatric hospitalization, etc. in need. According to the Treatment Advocacy Center’s 2020 “Grading the States” analysis of involuntary psychiatric treatment laws, “the United States is effectively conducting 50 different experiments, with no two states taking the same approach.” The organization believes AOT can do a lot to prevent entry into the revolving door, and research suggests the strategy is working: New York, which was the first state in the nation to adopt AOT in 1999, has recorded a 77% decrease in the incidence of psychiatric hospitalizations for current AOT participants compared to the three-year period prior to AOT membership, an 83% reduction in arrests, and an 87% decrease in incarceration rate. There was also a decrease in homelessness, nationally, among AOT program participants, and AOT was associated with a reduction in the average cost per person of mental health services, medical treatment and the involvement of criminal justice.

There has also been a decrease in homelessness, nationally, among AOT program participants.

“AOT is basically a legal procedure to mandate outpatient mental health treatment for vulnerable people,” Melada says. “The program is a collaborative effort between the justice system and the treatment system – all of these professionals working together to actively identify those in need, then ensure that those patients receive high quality services, and then redirect to voluntary care. if applicable.”

Successful AOT programs require the regular involvement of a long list of stakeholders.

The workings of the AOT vary from case to case, but one defining characteristic is that it is a tool of the civil courts; he is not associated with the criminal justice system. Typically, in the 47 states where AOT is currently permitted, a patient is referred to the program for review upon discharge from a hospital or prison. (It is important to note, however, that although AOT has been authorized, not all of these states are yet implementing it.) According to Johnson, successful AOT programs require the regular involvement of a long list of stakeholders, including a judge, health authority, community mental health providers, law enforcement, etc. “The composition of the treatment team varies depending on the needs of the individual,” says Johnson. “AOT not only improves lives and saves money, it also frees up much needed space in mental hospitals by reducing the number of people going in and out of scarce beds.”

While advocating for AOT programs and raising awareness of anosognosia are two of the primary goals of the Treatment Advocacy Center, they are not the only ones. The organization has also pledged to repeal what it calls “an outdated and discriminatory federal rule”: the Mental Illness Medicaid Institutional Exclusion (IMD), which prohibits low-income people from using Medicaid. to receive psychiatric care in a treatment facility with more than 16 beds. “Perhaps this law served a beneficial purpose in the 1960s, when it was created to try to reform mental asylums at the time,” Melada says of the rule (there is pending legislation to Congress to repeal it). “But this anachronistic law is no longer needed, and we have spent a great deal of time and energy advocating for its complete repeal.”

Until these kinds of systemic issues occur, families like the Stringers may continue to stand helplessly, watching their loved ones succumb to the “revolving door.” The day Stringer accepts an interview for this article happens to be his daughter’s 30th birthday. Kim spends it in a mental hospital; due to her anosognosia, she again stopped her medication. “My daughter unfortunately has very little information about her disease, which makes her reluctant to accept treatment and very difficult to get her to adhere to treatment, medications, all the things that she could benefit from,” says Stringer. 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’s determined to continue to be an advocate for the Treatment Advocacy Center and believes the organization’s work is invaluable in bringing about much-needed change for individuals and families in taken with an MMS. “It’s a complicated decision to tell the story of a member of your family,” she says. “But it boiled down to this: even though I wasn’t able to help my own daughter on some level, I wanted to help other mothers deal with it. And if telling our story could help that or humanize it, then I felt it was important to do that.

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