For several years, the Achelis & Bodman Foundation has supported groups that serve people with mental illness, especially projects that address the confluence of untreated mental disorders, substance abuse, and violence. The foundation draws important distinctions between serious mental illness and commoner mental-health conditions. A serious mental illness is defined as a behavioral, emotional, or psychiatric disorder that substantially interferes with major life activities. While an estimated 18 percent of the population copes with some form of mental-health condition, only 3 to 4 percent—roughly 10 million Americans—have a serious mental illness.
Achelis & Bodman focuses on these people coping with problems like schizophrenia, major depression, or bipolar disorder. Antipsychotic medicines, antidepressants, and lithium for bipolar disorder are currently able to reduce symptoms in about two thirds of such patients (or even more if treatment begins early). These medications are not cures, but they allow many affected individuals to live comparatively normal lives, and their efficacy rates compare well with many other branches of medicine.
However: several million individuals with schizophrenia, bipolar disorder, or debilitating depression are untreated today. In many cases this is simply because patients refuse to take their medications. Sometimes resistance is sparked by fear of side effects like weight gain, loss of libido, or mental flatness. Other severely mentally ill individuals don’t even know they have a problem—something specialists call anosognosia, meaning lack of insight. Just as an Alzheimer’s patient may not be aware of his deficits, perhaps 40 percent of people with schizophrenia are anosognosic.
Off their medications, or never treated, mentally ill patients can pose a danger to themselves or others. This reality has led to sharp disagreements about whether the mentally ill patient or a family member has better insight into the right course of treatment. For instance, headquarters staff of the National Alliance on Mental Illness generally hold that the civil rights of patients forbid letting anyone else make decisions about their treatment. Most local chapters of the same organization, however, support efforts to make it easier for family members to initiate treatment for their loved ones. The Achelis & Bodman Foundation exclusively supports groups that champion this “family point of view.”
The Mental Illness Policy Organization, founded in 2011 by advocate D. J. Jaffe, is one of the foundation’s grantees. Jaffe’s 2018 book, Insane Consequences: How the Mental Health Industry Fails the Mentally Ill, argues that the U.S. spends too much on mental health but not enough on the seriously ill. His organization and others supported by Achelis & Bodman promote a loosening of civil-commitment laws so families can commence treatment for the 40 percent of seriously mentally ill persons who are so sick—often in the throes of psychosis—they don’t realize they need help.
Jaffe also blames perverse reimbursement incentives in the federal Medicaid program for some of the problems in getting treatment for people with serious mental illness. Before Medicaid started paying most health costs for the indigent, state and county governments covered mental treatments. Once Medicaid started to gush, however, states began discharging patients from state hospitals before they were well, trying to limit their financial liability.
That is because the federal government instituted an “IMD exclusion” (institutions for mental diseases) in the original Medicaid legislation in 1965, banning care for mental health or substance abuse in institutions with more than 16 beds. In late 2018, the Department of Health and Human Services announced states can seek waivers from the exclusion. This announcement marked an advocacy win for Achelis & Bodman’s grantees.
Nearly every mental-health advocate believes that the optimal solution for most mental patients is local community treatment. Jaffe celebrates the “clubhouse” model used by New York City’s renowned Fountain House as one of the best approaches. This combines supported employment or other work with strong communal peer support, close management of care, and housing when needed. The Fountain House model has been replicated in 300 locations and now serves 100,000 people with mental illness.
Unfortunately, “not in my backyard” pressures make it hard in many cities to create as many group “clubhouses” as are needed. Plus Medicaid has not traditionally covered the social supports that keep seriously mentally ill people complying with treatment. More flexibility may be possible through waivers or other programs that provide qualified exceptions to Medicaid rules.
Government incentives are hurting in other ways as well. Payer cost-shifting due to Medicaid caps often forces patients to move from psychiatric units to ill-equipped general hospitals and nursing homes. Or seriously mentally ill patients are just released, and end up at homeless shelters or jails.
Something called “assisted outpatient treatment” is favored by many Achelis & Bodman grantees. AOT is mandatory court-supervised treatment within the community, with local mental-health systems playing important roles in helping participants adhere to their medical plans. If someone has a history of arrest, incarceration, homelessness, or needless hospitalization because of noncompliance with treatment, AOT provides a way to take him or her to court, under due process, and gain supervised community-based care. Assisted outpatient treatment has been endorsed by prominent mental-health advocacy groups, and by the International Association of Chiefs of Police, the National Sheriff’s Association, and the U.S. Department of Justice.
Because a court is ordering the intervention, there is a case manager responsible for monitoring the person and keeping him or her in treatment. This has reduced homelessness, arrest, and incarceration by 70 percent in places where it is put into place—cities, rural areas, Southern regions, Northern regions. Nearly all states now have AOT laws, but these programs aren’t enforced or funded consistently, even though AOT is less expensive and less restrictive than alternatives like in-patient hospitalization or involuntary commitment.
One Achelis & Bodman grantee pressing government officials for fuller implementation of assisted outpatient treatment is the Treatment Advocacy Center. TAC develops briefs, research, and policy advice to assist states in changing their civil-commitment laws. It provides technical assistance and resources that help counties, cities, and courts put their AOT programs into effect.
Another element of education and advocacy supported by the Achelis & Bodman Foundation is its funding for a documentary film detailing the work of Judge Steve Leifman in Miami-Dade County. In 2000, Judge Leifman created a Mental Health Project in his 11th Judicial Circuit. This diverts people with mental illnesses who have committed low-level offenses from incarceration into community-based care. Individuals accepted into the diversion program receive case management, housing, and other services. Judge Leifman’s program has been particularly successful in scooping up “super-utilizers” who consume large public resources as they bounce from emergency room to emergency room, from homeless shelter to jail.
Some individuals have such severe mental illness they may be unable to live in the community. For these individuals, Jaffe argues, a psychiatric hospital is the most humane option. But with the closure of most such hospitals over the last generation, it is tremendously difficult for any but the criminally mentally ill (who occupy nearly half of the remaining beds) to find a spot. That’s why advocates supported by Achelis & Bodman—like the Mental Illness Policy Organization and the Treatment Advocacy Center—believe that the number of psychiatric hospital beds needs to be increased from the current level of 12 per 100,000 population to more like 40-50 beds per 100,000. At a minimum, Jaffe argues, mental-health advocates should oppose further closures of state-run psychiatric centers.
By carefully zeroing in on a small number of grantees who are tightly focused on securing treatment for persons with serious mental illnesses, Achelis & Bodman executive director John Krieger and his trustees are having concrete effects on a field where many funders get lost in tangles of complexity or fuzzy targeting.
This is bringing crisp life improvements to individual patients. And, more broadly, the foundation aims to alter perspectives among mental-health advocates. What is most lacking today when it comes to solving serious mental illness, Achelis & Bodman believes, is not good intentions or even richer resources, but rather more realistic understanding of the roots of today’s problems, followed by pragmatic responses.
Anna Bobb is director of health programs at The Philanthropy Roundtable. This article is excerpted from her briefing “A New Frame of Mind: Philanthropy’s Role in Mental Health’s Evolving Landscape.“