Helping Milwaukee County Make Decisions

A few years ago the Republican controlled state legislature passed a law taking decision-making authority for mental health away from the elected county supervisors and replaced them with a group of volunteers from the community. The board includes mental health consumers, attorneys, advocates and mental health professionals. There are a lot of big decisions to be made regarding Milwaukee County mental health. The county is moving away from the model of maintaining a large mental health facility which they have been downsizing over the years by closing wards and shifting the people who lived there to community based facilities. Case management, which helps people live in the community, has already been contracted out to various agencies. These agencies help engage with consumers and connect them to services with the aim of reducing their dependence on in patient treatment, which is expensive and often very traumatic.

However, there are no guarantees in this system. We all know people in community programs who died but we can try to reduce the number of preventable deaths. We can ensure that case management provides necessary services. We can increase the number of affordable housing units. We can offer physical and mental health in a coordinated fashion and make certain that people are getting regular check ups. We can have clinics where we would want to be treated. These are very easy steps we can take in our own agencies

But what we do to guide the process of system wide reform? One way is by joining the mental health board. Imagine my surprise when a former co-worker asked me to apply to join the board, which is appointed by the county executive. I will be tossing my hat into the ring tonight to see if I can add my experience to this group. I am excited, interested and curious all at the same time. I will post some more as the process goes along.

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Shot while in the hospital

I just listened to a story on This American Life about Alan Pean, a young African-American man who experienced a severe psychiatric breakdown while living in Houston, Texas. Alan was a college student who had previously survived a couple of episodes of manic depressive disorder. Alan came from a high achieving family with doctors including his father.

Alan found that his mind was overpowered by a delusion  that caused him to jump off the balcony of his third story apartment, make his way to his car and crash through the gates. He drove toward St. Joseph Hospital, a major medical facility in downtown Houston. He crashed and totaled his car into the hospital and somehow told the emergency room staff he was having a manic episode. But he was never treated for his mental disorder. His father who is of Haitian descent arrived a few hours later and also told the staff that his son was having mental problems and yet Alan was still not evaluated by a psychiatrist.

His father left to try to arrange getting Alan help for his mental illness and shortly afterwards the staff had trouble with Alan and called for security. This turned out to be Houston police with guns who were not trained in dealing with psychiatric patients. Alan was tasered, then shot and almost killed and later charged with assault. Although the charges were later dropped there is a disturbing pattern of mental patients being shot or tasered by  police who have little or no training in dealing with them.

There is a New York Times article about the incident involving Alan Pean. People need to be aware of these kinds of incidents and understand that psychiatric patients need help, not bullets. They need people trained to deescalate and force is the last thing you would ever want to use to help someone recover his or her mind.

This story raises other questions, such as what if Alan and his father had been white? Would the outcome be different? Would the hospital staff  you turn to for help be able to recognize that when a white person says he needs mental help, they would hear the person and attempt to provide help? What prevents them from hearing the same statements from people of color? What information is available about the hospital you use and their policy about the use of force? How equipped are they to handle people with a mental illness? Is the person the staff calls for help going to be an armed police officer? And finally, what safe alternatives are there to hospitals for people with mental illness and how widely known are these alternatives?

The poor ask, who will care for us?

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In the Sunday Milwaukee Journal Sentinel the front page story asks, are health systems failing a moral test? My question is simpler, who will care for the poor? I have worked in several levels of mental health including apartment programs, the crisis resource center, the mental hospital and case management, for more than 10 years.  And much has changed during that time. The most dramatic is the downsizing of the mental hospital which now sites half empty. At the same time resources have been shifted towards improving people’s access to resources in the community. There are more organizations dedicated to ensuring that people don’t need the things that inpatient care provides.

When I worked at the hospital, nursing staff morale was low because they saw where it was going. I saw former nurses at a recent listening session held by the Milwaukee Mental Health Board. It was hard not to feel some sympathy for them as they talked about the end of their careers while in their 50s and early 60s.

There are multiple sides to this story. There are tragic stories of people who died at the mental health complex. There are people who did not need to be housed in the long term care units who were assisted in transitioning into the community. There are some acutely ill people being turned away from the mental hospital because there are not enough beds and not enough staff to care for them.

The Milwaukee County Mental Health Complex has always served as the safety net for the sickest and poorest of our residents. The Milwaukee Journal Sentinel asks which of the profitable existing private hospitals will take it over and serve their patients. People who had no insurance always knew the the county was there for them. But those days are rapidly coming to a close. They asked the advocates what they hoped for but I don’t recall anyone asking the people who sometimes become too ill in the community what they would like to see.  If I was a poor person looking at these choices, I would be afraid. And the nights are still cold.

Dear white people

Today was a day away from our mental health consumers as the Milwaukee county mental health and substance abuse contracted agencies attended a session designed to educate us about white privilege. The presenter was a very dark skinned man named Dr. Eddie Moore. The presentation is part of a year long series by the change agents program designed to help improve outcomes by making us more familiar with the concerns of living in an increasing more diverse society. Dr. Moore had grown up in a black neighborhood , became  addicted to drugs and remained involved with them until his first job after completing his bachelor’s degree. He didn’t clean up his act until he was forced to do so by his employers with Big Brothers Big Sisters.

Dr. Moore is in an interracial relationship and lives with his wife and children in Green Bay, Wisconsin. He is an experienced presenter and he and his wife own their own businesses.I was active on social media throughout the session, first complaining about hunger, then being disappointed by the quality of the food. I was sitting at a table with the staff at our agency who work for one of our other programs so I only see them at our Monday staff meetings.

I would estimate that 30% of the attendees were people of color. This included agencies and staff of Milwaukee County. Ours is one of the few agencies owned and operated b African-Americans so it was a little tricky taking about the ways that our policies may have been influences by the concept of white supremacy. There is also the problem of introversion versus extroversion. I was sitting next to a small quiet young woman waiting to break into the conversation at our table which was dominated by the more talkative people.

The program included an action plan which started with educating ourselves about the issue . I went to the library and checked out Color Blind Racism by Leslie C. Carr, My First White Friend by Patricia Raybon and Whiteness a Critical Reader.

I also admit that as an African American worker I have a certain amount of privilege regarding the consumers I assist. However, that is a topic for another discussion.

 

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Are African-Americans always so religious?

I am writing this in response to a training session sponsored by Milwaukee County in which Mark Sanders gave a very religious flavored presentation on recovery. The main focus was on developing cultural competence to work with African-Americans. He incorporated a lot of small group discussions and solicited a lot of feedback. I would even agree with some of what he said. There are consumers who are deeply spiritual or religious. I have several of them but as a secularist I don’t engage with them about something that I consider out of my realm of practice.

As for my agreements with Sanders, I have always focused on the strengths people present which may have been overlooked as they headed toward the cycle of diagnosis and disability. What do people do in their spare time for fun? I mention my hobbies or movies that I might have seen if the situation seems appropriate. I enjoy music which is one of my favorite protective factors. With music on my new computer I seek out you tube. On the way home I heard about an album by Thad Jones and Mel Lewis. I also seek out Cassandra Wilson, Aretha Franklin and Judy Collins. I can spend hours in the music room. Resilience, empathy and being able to identify with others help to keep me going. And although I joke about him, our cat helps to calm me down.

Overall I have learned to filter out a lot that I disagree with in these training sessions. It helped that I mentioned I did not like the presentation on my evaluation. One county worker asked me my opinion and I told her we need to find more secular oriented speakers to talk about African-American culture. Because not all of us are in the Amen corner.

We’re looking for few good people

The Recovery Advisory Committee of Milwaukee is looking for a few good people. This committee is guiding the implementation of the Comprehensive Community Services in Milwaukee County. This is Medicaid benefit that offers assistance to people who are seeking recovery from mental health and substance abuse problems. Its purpose is to cover the life span. In order to hold counties accountable the state of Wisconsin developed guidelines for community input. The largest portion of the committee is to be people who identify as having a lived experience with mental health and or substance abuse.

When we started out, we were meeting that guideline. But some people have fallen away. That is why we need to reach out and bring in more people. If you are interested in severing on this committee you can respond to this blog entry on Facebook, twitter, wordpress or wherever you are reading me. For more information, go to the Milwaukee County Behavioral Health Division website and look for C0mprehensive Community Services. We know you’re out there. Come, give us a hand or two.

Removing the language of stigma

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To the Heart of the Matter:  Stigma, Labeling, and the Delicate Search for the Common Good

Mad in America; James Schroeder, PhD, 6/13/2015

In March of this year, Leah Harris published a wonderfully thought-provoking article entitled Why We Must Strike the Terms High-Functioning and Low-Functioning from Our Vocabulary.  It clearly describes both the limitations and potential pitfalls associated with labeling, and how this can lead to long-term negative outcomes.  Often in my office, I am asked to provide such labels, especially for children who have been diagnosed on the autism spectrum as parents and others try to gain some understanding of what to expect from them now and in the future.  But as noted in the article, I also feel that the question is fraught with complications, the first being that we all operate on so many different dimensions that it is impossible (and incorrect) to simply categorize a person in one term.  Human beings can’t, and shouldn’t be equated to a simple descriptor, as we are a constellation of so many parts that make up who we are continually becoming.  I appreciate Leah taking the time to flesh out all the different ways that functioning designations such as these can go wrong.

But since this article was published, I have found myself coming back to fundamental questions which still loom about the topic of labeling and stigma.  The first is the topic of labeling itself, and the often asserted notion that labeling is bad and automatically results in stigma.  I think that this belief, too, has its own pitfalls.  Historically, there have been legitimate reasons to label and describe particular behaviors, including for the purposes of communicating more efficiently/effectively or providing an ability to research a particular trend.  Not all labeling is sinister by nature.  Some actually has, and continues to have good intent and outcomes.  Just as words and weapons can be used for noble or abusive means, so labeling a particular behavior or conglomeration of symptoms can be done (or result) in positive or negative circumstances.  I realize that many reading this may feel angry at the positive possibilities of labeling as they have experienced it in a negative way, but I think it is important to recognize that an alternative outcome can exist.

One of the benefits to providing a label for symptoms that are significantly distressing or impairing is simply to designate that there is a clear need for assistance.  Leah and others in her article embrace the idea of the neurodiversity movement, where all experiences and behaviors are seen as part of natural variation in the human genome and not abnormal or impairing circumstances.  In theory, this sounds like a kinder, gentler way of perceiving what happens to all of us.  In some ways, I agree that all that we do is part of the variation of the human experience, no matter how far off the “normal” or “healthy” pathway it may be perceived to be.

But there is at least one serious hiccup to this movement, in addition to my concerns previously expressed about how this provides a confusing landscape for teaching what is healthy and/or normal  in order to provide for well-being.  It is the matter of how we know who needs assistance and who does not, and then the authorization to provide resources for those who do.  This was passionately, even angrily, articulated by the first commenter on Leah’s article, who stated:

“The neurodiversity movement is hurting those of us who genuinely are debilitated due to our autism. Do you even care about that? Not to mention that those of us who are debilitated by our autism need to be able to use the descriptor “low-functioning” so that we can get the supports we need. Without that descriptor, there’s no reason for anyone to think we need any help or support at all. Again, do you care about that? It seems to me like all you care about are autistic people who aren’t debilitated and who can function independently. Well, from an autistic woman who struggles daily with social anxiety, depression, hypochondria, and general anxiety disorder (and yes, all of those conditions were professionally diagnosed), and who can barely work as a result of all of those conditions, I’m not going to stand for that.”

It is a serious concern.  There are many people who desperately need and desire help for conditions that have nothing to do with stigma or labeling, or cannot be accounted for by the social model of disability.  There is no doubt that societal and cultural factors bear much responsibility for what happens to individual human beings.  But I think it is a stretch to state that these factors are the main contributing factor to disability, as all kinds of societies see similar problems even if to varying degrees.  I see this most in the families I work with who have a child diagnosed with an autism spectrum disorder (ASD), whose children often struggle significantly with a variety of basic skills that impair daily functioning even when all available resources and consideration are provided.  Along the issue of stigma, too, it is interesting to note (for better or worse) that more parents of today (who come for an evaluation regarding ASD) are surprised, and even frustrated, when the diagnosis is not given than when it is.  This in itself, though, is a discussion for a later time.

But the other position that often gets promulgated unfairly is that stigma is a one-way street.  So frequently I see articles that suggest that a label given = stigma.  Although I again realize this is a delicate, emotional subject, I think that simply suggesting that labels (and those that use them) are responsible for stigma is like suggesting a clinician providing a treatment is always responsible for negative outcomes.  Certainly, treatments can be inappropriate, misused, or altogether ineffective, but we all understand that there is a bidirectional relationship that exists.  Simply put, for every action, there is a reaction.

The same applies with labeling.  I know many who have received a diagnosis, and have seen it as an empowering, freeing idea (again, for better or worse), in that they no longer feel solely responsible for their deficiencies or struggles.  I know parents who have felt relief in understanding that a child’s problem-solving skills or even overall IQ was less-developed than his or her peers, as it helps validate confusion and reduce blaming about why repeated instruction of various natures was not having the same impact as it did with another one of their children.  I believe that what we do with the labels given is just as important, or sometimes even more important, than the label itself.

Recently, a family friend by the name of Michelle Krack wrote a memoir of her struggle with Bipolar Disorder, aptly labeled Michelle May Crack.  I admire her greatly for telling this story of intense struggle and resiliency, especially as it included difficult details about her childhood that most would not have known.  On the inside of the book I purchased from her, she inscribed to me, “Make a difference—Beat the Stigma” as she has certainly dealt with much of it over her life.  When I read this, something about the statement struck me, immediately arousing the question, “Just what are the best ways to stop the stigma?” as it certainly wasn’t just the label for her that led to many problems.  It also led me to consider just how we often speak of stigma, as if it is almost a living, breathing organism itself that flows throughout our land.  But of course, we all know that stigma is really an intricate composite of individual experiences and reactions over time, each that presses an individual into difficult, uncomfortable decisions and circumstances.  Ultimately, it seems that stigma manifests itself most when fear and embarrassment (understandably) leads to a condition of low worth and feelings of powerlessness and/or isolation that persist over time.

But in order to counteract stigma both on an individual and societal level, we have to be honest about all of the parts and people involved in its creation.  And that’s where I hope this article leaves off, and encourages many others to begin.  Otherwise, I worry that the discussion of stigma and labeling risks becoming another sound off, and not a truly informative and dynamic conversation about all the factors that should promote labeling when it is needed and necessary, and either remove or neutralize it when it becomes detrimental.  It seems we should spend as much time identifying (and teaching) factors that facilitate resiliency when labels are given as we should in reducing labeling in the first place.  As mentioned in prior articles, I prefer minimizing the use of labels whenever possible in my own practice, but sometimes I believe that descriptors and even diagnoses are warranted, and even can be useful.  Certainly there are many pieces in this human puzzle, all of which play an integral role in perpetuating the common good.

I will end with Leah’s conclusion.  She said:

“Imagine what would happen if we began to have some respect for the varied ways that people do their best to adapt and function, sometimes with amazing creativity, in a deeply dysfunctional world? I would like to see us cease to blame or shame individuals for their level of functioning in society, and instead work to create a more equitable and just world that meets our basic human needs and human rights.”

It is a beautiful vision, only made more beautiful by one additional idea:

“Imagine, too, that all of us could better understand what role we played in our struggles and shame, and that in truly acknowledging what these might be, we would valiantly strive to overcome internal obstacles in seeking out the best possible alternatives for ourselves and others, even if many did not agree with, or value us, along the way.”

What a truly beautiful world it would be!

http://www.madinamerica.com/2015/06/to-the-heart-of-the-matter-the-delicate-topic-of-stigma-labeling-and-the-search-for-the-common-good/