Mental health is easily the most frustrating corner of a healthcare sector rife with shortcomings and unmet needs. What's maddening in this case is that government funding has declined even as the potential for improving mental health has increased. Worse, perhaps, is how a backward mental health system routinely inflicts harm on those people who come in contact with it.
This sounds like a place where philanthropy can make a real difference, which was precisely the thinking behind the creation of the Foundation for Excellence in Mental Health Care in 2011, an organization that operates as a community foundation and hosts donor-advised funds—but with a global scope and an exclusive focus on mental health. "Our community is the world," says Senior Program Officer Yana Jacobs.
This isn't a set-up we see every day. In fact, I can't think of any other organization like this one. Most healthcare funding outfits are traditional pass-throughs. Donors give money and the organization turns around and makes grants, whether for research or treatment. In turn, most community foundations have a geographic focus—and one that doesn't include the whole planet.
But the unusual structure of the Foundation for Excellence in Mental Health Care actually makes a lot of sense, and you can see why it would appeal to individual donors who want to do something to improve mental health.
“Most of our money is coming from people who have a very specific interest or want to fund specific work," says Jacobs. Those interests reflect the experiences of donors who often have had personal experiences with mental health issues and are keen to target funds in a way that reflects that experience. Donor-advised funds—whatever one may think of this kind of charitable vehicle—are definitely a way for a donor to control where their money goes.
All of which helps explain the momentum the Foundation for Excellence in Mental Health Care has achieved in just a few years. The foundation now operates 20 different funds that tackle a range of mental health challenges in the areas of research, treatment, and education. To be clear, the foundation also takes in regular donations to fund its work, just like community foundations. Not every donor, after all, is interested in hands-on management.
The creation of the foundation was sparked by the publication of the 2010 book Anatomy of an Epidemic, by Robert Whitaker, which described a deeply broken mental health care system. The book resonated both with readers who'd had contact with that system—which often rushes to improperly diagnose patients as mentally ill—and also people who had worked on mental health issues for decades. Some of those galvanized by Whitaker's book had enough resources to try to make change, and saw a foundation as the key. "If the government wasn't doing it, we'd turn to philanthropy," Jacobs says, describing how the founders saw the challenge. And so the Foundation for Excellence in Mental Health Care was born. Its president and CEO, Gina Firman Nikkel, brings deep experience in community mental health programs to her post. Jacobs spent thirty years working on mental health at the county level in California before joining the foundation. A scientific advisory board stocked with Ph.D.s and MDs helps guide the organization's work, and it is collaborating with a number of partners, including hospitals, university centers, and mental health advocacy groups.
What's compelling about the foundation is that it has a stinging critique of the status quo—arguing that the "medical model is not a useful way to understand mental health conditions" and that the "wellness model of care should be the norm." But it also advances a super-hopeful message: that making progress in improving mental health is not rocket science since there are many proven models out there that enable people with mental health conditions to lead more productive lives. "Promising new methods infuse treatments with a much higher expectation of recovery—by relying less on medication and more on engaging families and communities," the foundation says.
One example is Finland's Open Dialogue approach, an alternative to the traditional heavy-handed way that the mental health system handles people diagnosed with conditions such as schizophrenia—namely by pumping them full of drugs to the point that many can barely function.
The foundation describes Open Dialogue as a way to help individuals in "acute psychiatric crises to find recovery with little or no use of pharmaceutical medications," and it hosts a fund to adapt it the United States.
Jacobs cites another promising approach from the U.K., which addresses people who are hearing voices, helping them in a way that doesn't instantly pathologize them as ill and jack them up on psychopharmaceuticals, which is often the first reflex on this side of the Atlantic. Instead, research shows that people hearing voices can learn to manage this condition. The foundation has a fund to bring this work to the United States, too.
Jacobs says that the rush to medicalize mental health challenges is a key way that the U.S. system inflicts harm and needs to change. “There’s been a lot of people who have been wrongly diagnosed," she says. And that can be especially harmful for young people. ”Most of these diagnoses of young people are incorrect, so we’re damaging people at the front gate... People are given a life sentence."
This is a familiar story in an American healthcare system in which doctors reach too fast for pills and technology, giving short shrift to more holistic approaches to improving well-being. The fact that powerful industries make billions from the current system, which is rife with conflicts of interest, is part of the problem; one that's been widely documented in the case of Big Pharma pushing medicated solutions at every turn, including powerful drugs that are not fully understood and can be dangerous. Jacobs notes that the drugmakers often have a monopoly on the research on those drugs and don't think twice about burying negative findings. That's a racket that needs to be challenged, she says.
Among the donors to the Foundation for Excellence in Mental Health Care are those who had terrible encounters with the mental health system and want to change how things are done. Other donors saw loved ones taken by mental health challenges that should have been better treated. So there's tremendous passion at this organization, which has a deeply committed board.
Fundraising, though, is not easy, says Jacobs. There is still much stigma around mental illness, making donors wary of association with this funding area. Those who've suffered from mental health problems, or who have seen loved ones suffer, don't come out publicly the way that survivors of cancer or heart attacks do. Which, among other things, makes it difficult for the foundation to identify donor prospects.
Still, for an organization that's just five years old, the Foundation for Excellence in Mental Health Care has done a great job of positioning itself as a unique player that adds value, and its funding model is appealing to donors who don't want to play a passive role. Now it just needs more of those donors.