"Musings" by Liz Rebensdorf, President NAMI East Bay

The public image of those with mental illness is too often one of erratic, sometimes violent behavior in the persona of a scruffy individual who is noisy and unpredictable. My guess is that this individual is either not taking prescribed medication or is a person dealing with serious substance abuse issues - or both.

Untreated, people living with SMI experience distortions in thinking and perception and they are often unable to engage in logical thinking, self insight and the ability to differentiate reality and fantasy. This is an illness, not a life choice nor a by-product of character flaws or upbringing. We don’t know how to cure it, but we do know how to stabilize the symptoms.

It is important to know that there is a large community of persons with SMI who are able to hold jobs, raise families, have social interactions...essentially live a stable life. They take their medications, perhaps engage in therapy and take care of themselves. Among this group are activist individuals, also with a diagnosis (current jargon identifies them as "consumers", "peers" or "individuals with lived experience") who are actively engaged in self-care, group activities and advocacy for services. Often, their efforts are geared towards supporting others by modeling coping skills. Housing choice is most often to live independently.

There is yet another community of people with SMI, the ones I hear about most often. These are the quiet individuals "in the back bedroom". Carrying a diagnosis of SMI, they are the sufferers having an internal struggle with their own brain function. Sometimes they live with family members and sometimes they reside in a Board and Care facility. Medication compliance may be high but lifestyle engagement is low. At the risk of over-generalizing, I’d describe these sons/daughters as passive, isolated, lonely, and unengaged socially and vocationally. They are often preoccupied with internal machinations. And, their realization that other people their age are moving on is a poignant one, sometime resulting in irritability and upset, more often sadness. These are not the lives they anticipated when they were young and wondering what life would hold for them. Caring families suffer in the loss of the essential child they raised and for whom they had dreams.

As we face the crisis of homelessness, we need to understand that an estimated 40 percent of people living on the street have a SMI. Stable, permanent supportive housing is the crucial thing they need to achieve stability. Traditional housing without long term support will not work for them.

One of the main types of housing that can work for people with SMI are licensed Board and Care homes, where housing, meals and medication support are provided. Yet the number of those homes is drastically declining. Inadequate government reimbursement has simply made many of them financially unsustainable in the Bay Area. Skyrocketing housing prices mean that as operators "age out", they can sell or rent their property for multiple times more money.

We must stem this current rush to closure and ensure reimbursement adequate to feed and support individuals who can live stable lives in permanent supportive housing. Operators need a professional network and support. This is a statewide problem and calls for a state solution and state funding.

Without urgent action, there will be more seriously mentally ill persons "living" on our streets. As an aging mother, I am fearful of what will happen to my son if the housing options that have helped stabilize his life keep closing down. I am not alone. Families across California live with the same anxiety. We know what can be done. The question is whether there is a will to do it.

So I was attending an open house event for a new resource, Amber House, described elsewhere in this issue. The physical layout was appealing and as I wandered onto the deck, I overneard a staff person start giving a description of the facility to a small group. In her second sentence, she uttered the words "working with the family"......needless to say, that, unfortunately, surprised and delighted me. Too often, family members are dissuaded from the notion that they are to any degree considered part of a team...a team developed to help a person with whom the family has been loving and living with for probably more than 10 years.

To be sure, our relatives who carry a diagnosis of mental illness function and are symptomatic in every way possible; there are many variations on a theme. My son with Schizophrenia is quite different from a friend's son with Schizophrenia who lives in New York City and attends the opera and ballets. And, the individual on the street in a manic phase with his diagnosis of Bipolar Disorder presents very differently from the fellow with the same diagnosis who takes his meds and has negotiated accommodations at his workplace. And some of these consumers have an involved family and others, for various reasons and history, are estranged from or just not in contact with relatives.

Working from the premise that the class of individuals with diagnosable mental illness is tremendously diverse, our perspective has to deal with the realities of underlying treatment options. The caveat, of course, is that there is no one treatment option what works for everybody. There are treatment models to emulate, and Amber House seems like one of them, but consider what else I heard at the open house.

The range of people present who were introduced as being part of this development included staff from not just host agency BACS but also individuals from state, county and municipal governments, architects, developers, financial experts and Behavioral Health Care personnel. It took a huge amount of people to put together just this one treatment option...and meanwhile the huge amount of folks across the spectrum of functionality is still out there, desperate for treatment.

So we have a situation where it takes an extremely large number of professionals, resources and creativity to offer treatment to a diverse group of individuals with mental illness who vary widely in terms of need and functionality. And, underlying this conglomeration are issues around federal and state regulations, funding sources, patients rights, confidentiality, housing issues, stigma, willingness to accept help, etc.

Perhaps it's amazing that anything ever gets done in the system. There is one constant though in most of these individuals' lives that is seldom considered part of the treatment team and that is the family. So when family support is mentioned or even considered part of a therapeutic intervention, we cheer!