Tuesday, July 30, 2013


Born: September 4, 1935, St. Louis, MO     Died: May 8, 2013, Pasadena, CA

Why can we not see the whole human and stop just looking at the parts?  How wonderful it would be if psychiatry and mental health professionals would stop this reductionist trend toward brain and return to the notion that mind is greater than mere brain.  David Willard, a philosopher at the University of Southern California for nearly five decades said when being careful as he always was to note the distinction between the mind and brain, ”God has never had a brain and has never missed it.”

You may be one who believes in the biomedical model of mental illness or you may be a person who believes that mental illness is a spiritual emergency.   You may believe in the possibility of total recovery from a serious mental illness or you may believe it is a lifelong struggle.  No matter what you believe about mental illness a recent publication changed the landscape.

The fifth edition of The Diagnostic and Statistical Manual of Mental Disorders (DSM-5), published in May 2013, is a major revision of the DSM.  A person’s opinion of it does not change the fact that it controls the labeling and the billing processes for the majority of the mental health care given in this country.  It has its critics and its supporters, but what does it mean to people trying to get help for pain that is called a serious mental illness?

DSM-5 claims to be a move to a more scientific approach to the practice of psychiatry.  The most important page of DSM-5 is the page “Cautionary Statement for Forensic Use of DSM-5” which in the soft cover edition is page 25.  This is my favorite quote from the page, ”a particular diagnosis does not imply a specific level of impairment or disability.”  Wonder why all the literature from mental health professions usually indicate that bipolar and schizophrenia are serious mental illnesses if they don’t mean to imply anything by their labels about impairment or disability?  They also use severe and persistent mental illnesses, but I guess that still does not imply anything about functioning.

 I am getting close to my 65th birthday and as I look back I have been robbed of the chance to reach most of my dreams.  I started Project Dream Again in 1989 to encourage folks to learn to Dream Again.  Now I need it myself.  I can’t go back for a redo.  Many things I dreamed about doing I don’t have time to get done.  It is not a matter of poor Ed.  It is a matter of will we ever even come close to getting this damn thing right?

From the mess of reductionist nonsense to the people who say all of us can recover, are we ever going to come up with a model that fully sees and deeply hears the whole person? 

Acts 2:17(NIV)

17 “‘In the last days, God says,
    I will pour out my Spirit on all people.
Your sons and daughters will prophesy,
    your young men will see visions,
    your old men will dream dreams.

Do we have to wait to the last days? 

Monday, July 08, 2013

DOES IT MATTER WHO'S AT THE TABLE: Participatory Planning & Decision Making

Back on January 8, 2008 I posted a piece titled Participatory Decision Making which you can still read at http://projectdreamagain.blogspot.com/2008/01/participatory-decision-making.html
At that time I was responding to the appointment of Dempsey Benton to head HHS in North Carolina.  I wrote then “It seems that editorial boards across this state are delighted with Secretary Dempsey Benton and his ‘proven’ administrative ability. Let me be clear. The fact that you were a good or even great city manager of Raleigh or a competent administrator of another state agency does not mean you know enough to deal with the issues facing the mental health system in this state. Just being a nice guy does not cut the mustard either.”
I went on in the piece to advocate for a more participatory decision making process.  I wanted more than just token participation by people receiving services in the design and implementation of the mental health system.  I wanted more than just a few Peer Support Specialists trained and hired around the state to fill some positions folks felt like were not too critical.
We have never been a full partner in the design, development, and implementation of a state mental health system anywhere in this country and certainly not in North Carolina.  There are places where the consumer/survivor/ex-patient movement has been more influential than others, but in the overall I know of no state where it can be said that we were full partners.
A fair question then is would it have made a difference? One place you can go on the web to help you answer this question for yourself is to http://www.power2u.org/
There are others and on the above site you will find links to most of them.  Another place is the National Mental Health Clearing House which can be found at http://www.mhselfhelp.org/
There are still c/s/x folks or consumers or peers or clients or paid advocates or volunteer advocates or family members (I have tried to use all the names) or organizations of the above who think they can speak for others.  That means if one or two of them get at the table they think we are well represented. 
If one can get past the feelings created by being included, they will quickly see how few their numbers are and in most cases how little information they have compared to the people running the meeting.  Then they should ask themselves how does the final decision get made?  How then do the decisions about implementing it get made?  How many real choices will the individuals have by the time it gets to them?
Participatory decision making is hard.  In this country we have a republic which at present we can barely make work.  We know little about how to make a participatory democracy work, but that is precisely what it takes if you intend to implement person-centered service planning.
Person-centered services cannot be delivered in a system run like a dictatorship.  The following is a quote from the Community Tool Box website.
“Often, the most difficult part of participatory planning is to make sure that the ‘experts’ actually listen to community people and members of the target population and take their ideas seriously. The goal isn't automatic acceptance of those ideas, but serious discussion of them, just as for the ideas of the professionals and policy makers. If the assumption is that only the professionals have something to offer, it doesn't matter who's sitting at the table - the process isn't participatory. It can be difficult, even for an outstanding facilitator, to turn this situation around.”
For a system to be able to implement a person-centered system the people on the front lines have to have the freedom to respond to the person as a human being not a billing code.  Stated needs and wishes of the person cannot be met if every service has to be pre-approved by the money people.  It sounds good to say we have a recovery person-centered system in North Carolina, but it is a lie because a provider has to get everything pre-approved.  There are other reasons it is a lie, but that is such a big one I don’t need to point out others.
As the Community Tool Box pointed out it probably doesn’t matter who the hell is at the table, but I wish North Carolina would stop saying they have a person-centered and a recovery oriented system.  As long as it is top down and not participatory in its governance it can’t and will never deliver what it is promising.