Slowly But Surely, My Advocacy Work Continues

Most people’s minds, including my own, are on the elections. I’ve been thinking a bit about what the results mean for the future of mental healthcare reform. I’m reminded every day of the inhumane consequences created by my mom not having access to adequate psychiatric treatment. How could I not think about it?

Today, it was at a visit with the neurologist. My mom started crying during a memory test, because she couldn’t answer some of the questions. She doesn’t understand the nature or full extent of her health problems, but she knows she is being unjustly deprived of a better quality of life. So, despite whatever happens politically in our country, I’m in it for the long run. No person, no family, deserves to be so ignored, neglected and abused.

Slowly but surely, I’ve been gaining more attention to my blog and family’s story. Part of this has been done by contacting other bloggers, advocates and advocacy organizations. While I’ve gained support and interest through Facebook and Twitter, I’ve definitely garnered most of my attention through promotion at other blogs and, more recently, joining an actual campaign.

earleyautoI was fortunate enough to have one of my blog posts promoted by well-known mental health advocate and writer Pete Earley. Pete has written a number of books, including two on mental illness. His book, Crazy: A Father’s Search Through America’s Mental Health Madness, is based on his own experience with trying to get psychiatric treatment for his son. I had actually read the book some years ago when I first started trying to get help for my mom. It truly is a fascinating read and remains one of the most valuable resources I’ve come across in learning what my family and I are up against. Pete was also very warm through our communication. He even sent me an autographed copy of his book Crazy. I’d encourage anyone interested in mental health reform to read the book and subscribe to his blog:

I also had a blog post promoted by the Treatment Advocacy Center, an organization that specifically focuses on the lack of treatment and programs for those with serious mental illness. More recently, they asked me if I’d participate in a campaign to raise awareness for the need for more psychiatric hospital beds. It wasn’t too difficult a decision for me. I had some concerns about what kind(s) of actual policies, if any, this may lead to them pushing for. I wouldn’t want my family’s story to be used for something I wouldn’t agree with. I figured I could always decide to stop participating, though, down the road if need be. The campaign #ABedInstead was launched last month and I’m happy to be a part of it:

commentsI was quite surprised, actually, by the amount of support and interest my family’s story generated, on Facebook in particular. It received more than 1000 “reactions”, 167 shares and almost 100 comments. The comments provided me with helpful feedback. Overwhelmingly, the comments were religious in content and highly supportive. My mom’s illness takes very religious and cultural forms. Indeed, she has always been a devout Christian. This response definitely makes me think I should touch on more of the religious aspect of her life, and religion and mental illness as a subject matter. It’d be challenging, but it’s worth the try.

Other things I may do is start a YouTube channel where I talk about being an advocate and caregiver for my mother. I might even try writing a book or two. Those articles I’ve been meaning to write on racial/ethnic and class disparity in mental healthcare definitely need to get done first, though.

“The Most Important Election in Our Lifetimes,” But for Whom?

The “most important election of our lifetimes” chorus is at a fever pitch this year, given the top presidential candidates’ very different styles and rhetoric. Is it as important for everyone, however? If recent history is any guide, too many people with serious mental illness (SMI) and their families will continue to grossly and unjustly suffer, regardless of who wins.

1 in 5 Americans live with a mental health issue such as anxiety or obsessive compulsive disorder. Less known, however, is that 4% of the population, 1 in 25 Americans, suffer from a SMI such as bipolar disorder, major depression, or schizophrenia. Of this subgroup, about 40% go untreated. They end up being disproportionately included among the incarcerated or homeless. In fact, about one-third of the homeless suffer from an untreated SMI. Too many others are prematurely lost to suicide.

Part of what makes people with SMI difficult to treat is the nature of their illness. For more than fifteen years now, my mother has been living with a SMI. She suffers from severe persecutory delusions, paranoia, and hallucinations. She believes cameras in the walls and neighbors watch and monitor her, and, at times, that her food, water and the air are poisoned. Daily, she claims that evil spirits are attacking her, causing her both physical and emotional pain.

My family and I have tried desperately to get her help, but nothing has succeeded, not family interventions or meetings with religious clergy, not meetings with counselors or psychiatrists. To her own detriment, she does not believe she is ill. Researchers call this lack of insight “anosognosia.” Approximately, 50% of the people with SMI suffer from it.

And, as the statistics suggest, my mother has experienced extreme hardship. She has gone from being employed, married, and middle-class to being unemployed, divorced, and impoverished. Recently, she experienced a two-year stint of homelessness, living mainly in her car in California’s Central Valley, at which time, both her physical and psychological health greatly deteriorated. Physically, she suffers from diabetes, congestive heart failure and, most recently, kidney failure. She has not always heard voices, but her psychosis has deepened to the point that she now hears voices around 80% of the time.

The government and mental health care system share blame for our plight. Through lack of responsiveness and by design, they have made it exceedingly difficult to get help for my mom. At various times, my sister and I have contacted and met with different county departments and agencies. More than once, for example, we had to badger Adult Protective Services (APS) and the Public Guardian Office (PGO) just to check in on my mom. Ultimately, APS passed the buck to the PGO.

The PGO, in turn, concluded that my mom was competent enough to take care of herself. In the same breath, however, the PGO manager told me that my mom needed to be involuntarily psychiatrically hospitalized and treated! PGOs can and do take responsibility for the care and housing of people with mental illness. This was the manager’s way of telling me they did not want responsibility for someone who was not stable and adherent to psychiatric treatment. Like the APS, the PGO was washing its hands.

Sure enough, my mom has been involuntarily hospitalized, what in California legal terminology is called a “51/50 hold.” Altogether, she has been 51/50ed six times for putting herself in danger, two times in San Francisco (more liberal), two times in Fresno, and two times in Bakersfield (both more conservative). Each time, however, my mom was released in under 24 hours without even being psychiatrically treated, ostensibly for no longer meeting the “legal threshold” of endangerment, but also unquestionably because of a lack of psychiatric hospital beds.

The stats bear this out. Not unlike other areas of health care, for decades, deep cuts have been the trend. According to the Treatment Advocacy Center, nationally, we now have 11.7 psychiatric beds per 100,000 people, as compared with 337 beds per 100,000 people in 1955. In California, according to the California Hospital Association, the number of psychiatric beds available statewide decreased by 2,700 — or nearly 30% — from 1995 to 2013, while the state’s population grew 20%!

Why? Part of it is because mental health funds are being improperly diverted. In California, the money legislatively intended for people with SMI is going into programs and services that are not accessible to or effective for people with SMI. In fact, recently, the State Auditor found that mental health money and outcomes are not being adequately monitored.

There is also a bipartisan consensus on continuing to close psychiatric hospitals and under-resource those that remain open to reduce public spending, in the name of “fiscal responsibility.” Ronald Reagan may have initiated the closing of psychiatric hospitals, but plenty of Democrats, including President Obama and California Governor Jerry Brown, are continuing what he started.

To her credit, Hilary Clinton recently released a promising mental health plan. It calls for decriminalizing mental illness and supportive housing, among other things. There is virtually no mention, however, of the lack of quality psychiatric hospitals or treatment programs that could help people with SMI— As if it is not even up for discussion. There is, also, no mention of support for a congressional bill (H.R.2646), which attempts to partially address these problems. Donald Trump has not made mental health care reform a priority at all, but Clinton as of yet has not shown a true appreciation of the scale of the problem.

Sure, it is easy enough to say that Clinton’s plan provides at least a basis for improving our mental health care system. As a political scientist, I understand politics is the art of compromise. I also know, though, that health care insurance companies hold too much sway and politicians, of both parties, are more responsive to Big Business and the affluent, rather than the indigent, old, and disabled, their rhetoric and policy statements aside. I have, after all, contacted various political representatives to try and get help. Some inquiries have been made reluctantly on my behalf when dealing with slow and/or incompetent agencies/departments, but not any one of them has ever asked me what kind of policies or programs could help my mother.

Instead of waiting for enough help from the system, I took a leave from my job to try to take care of my mom. I moved her in with me this past February. At the time, she was living in a hotel. Her health is frail and I worry she does not have much more time to live. She, and others like her, deserve access to quality hospitals with well-trained, and culturally responsive doctors and staff. We look forward to the election results, like most of the country. But regardless of the outcome, we will continue to live day to day just trying to survive in a society that is, in many ways, “mad” and needs healing and treatment, too.