What makes life better

September 30, 2014 by

If life is about momentum then two sets of factors are important.

What are the risk factors (behaviors, situations, relationships, emotions, attitudes, and ideas) that tend to be precursors to things going worse? What predicts bad times coming? What makes bad times and problems more likely?

What are the protective factors? What (behaviors, situations, relationships, emotions, attitudes, and ideas) build capability? What makes positive outcomes more likely? What builds resiliency in difficult times?

Do what you do when life is going better. Things that make you stronger increase your chances of living successfullly in life and more likely to coping when you are not.

Doing things that are good for you won’t prevent life from having problems. Nothing does that. Much is beyond control. But it may make it less like likely and more likely if there are problems you will deal well with them.

You may or may not be able to control whether or not you have problems in life. But everything is better if you do all you can to build solutions into the fabric of daily life.

Recovery vs. Disease Management: The Core of the Argument

September 29, 2014 by

hopeworkscommunity:

rom the archives

Originally posted on Hopeworks Community:

  •  Recovery  believes that individuals matter.  No degree of impairment or difficulty makes them matter less.
  •   Disease management believes that the disease or diagnostic label is the most important thing about anybody.
  • Recovery believes that if an individual is important then what is important to him is important: his thoughts, feelings, goals, aspirations, interests, hopes and dreams.  No amount of impairment or difficulty makes this less true.
  •  Disease management believes that many things that an individual values are a creation or result of his disease.  It believes that these things do not have as much validity as they do for people without a diagnosis.  It believes the most important thing is symptom management.  What is most important is not that people are people, but that they are “diseased.”
  •  Recovery believes that if an individual is important then what is most important is what he chooses for himself and not what…

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What I believe

September 29, 2014 by

These are some of the fundamental ideas and values that have guided Hopeworks Community over the last years.  Most of them have been the subject of multiple posts.

People should be able to make their own choices about their own life.

They should have choices that matter.

They should have access to the knowledge, skills, and support that enable them to make the best choices they can for their own life.

They should have the ability to change those choices as life dictates or circumstances change.

Nothing that anyone is called or limits makes them less of a human being, broken or deficient in some fundamental way.

All of us have limits.  There are some things that will not change and some things we will not be, but the capacity for change, for life getting better…..for hope is real and not based on groundless wishing or pollyannish thinking.

People can and do thrive under the  most challenging of circumstances.  Dont give up on anyone.

People who live difficult lives can be successful in their endeavors…..connected in their relationships…..and live a life of purpose and meaning.

Man is a biological, social, emotional, historical, cognitive, spiritual and relational being.  Any system of  thought that reduces man to one of this dimensions or that tries to say that one of these dimensions is more fundamental or the cause of others distorts what people are.

A biological, social, emotional, historical, cognitive, spiritual, or relational fact is most important in the way it manifests itself as a human issue and the misunderstanding of this causes great harm.

Life is largely a matter of momentum.  Things that are more likely to happen, all other things being equal, tend to happen more often.  A major secret to being in control of your life is understanding how to control the momentum of it.  Bad things can and will always happen.  That is what it means to be alive.  But we can affect the difficulty with which they occur.

People learn.  Experiences have the opportunity to teach us important things that make the experiences after them better.

Meaning matters.  In choosing what we make of things we make likely what they make of us.

Many people are ordinary people dealing with extraordinary circumstances and we so often do not acknowledge their courage or give them the credit due.

In any circumstance some people are doing better and some people are doing worse.  The people doing worse can learn from the people doing better.  Lived experience matters.

Every person has times where they are doing better and times when they are doing worse.  As much as you can do better things on purpose.

Support is essential.  People who dont support others normally find it hard to find people who support them.

Taking care of yourself does not mean living like you are the only important thing in the world.

Accepting what you cant control gives you the capacity to control the things you can.

“What happened” is the most important question you can ask anyone.  Helping people to cope with injury is more often than not the key to really caring.

Feelings lie.  It is often not as bad as it feels.  It is often not as good as it feels.

There is no real explanation for tragedy.  It just is.

What do you advocate for?

September 24, 2014 by

In a preceding post I talked about an essential, suprisingly often forgotten, step in advocacy. Before anyone can respond to what you ask you must be clear about what you are asking.  If people are not sure what you are selling they probably arent buying.

I also talked about the importance of being for something.  It is a lot easier to convince someone not to buy something if you give them a better alternative.

I have listened to a lot of ideas about change.  Some seem very important and very doable. Some dont seem relevant to current reality.  They just arent going to happen.  No one other than a small group is for them and it is unclear if hopes for legislative support are even realistic.  Some dont seem like they are very true. They are not what they are advertised to be. Some seem important. Some seem not so important.

The questions below are adapted from a previous post. They are one way, certainly not the only and probably not the best way to look at proposed mental health reform. How much would a proposal actually change things? Does it address important problems? Does it address what you want addressed? Does it leave important questions unaddressed?

What does the proposal have to do with:

The issue of access to services. There is no help if you cant get it. Lack of access is a major issue for many many people. Health care reform and adequate funding for mental health services are both essential.

The issue of effective services. Many things we do dont work very well. Some things may even do more harm than good. We do too much because that is what we are used to doing or because someone has a vested interest in continuing to see it done.

The issue of making sure those who seek help are treated with dignity and respect. For too many the most difficult thing is not the issues they deal with but the system they turn to for help. Those who help you should not be a source of trauma in your life.

The issue of making sure that people have access to correct information to enable them to make decisions about their own lives. The mental health system should be accurate and honest.

The issue of supporting people in making those decisions. Empowering people to be in charge of their lives.

The issue of enabling people to acquire the skills and tools that really make a difference in their lives. Learning makes a difference and the mental health system should make possible learning that makes a differerence.

Addressing issues of homelessness, joblessness, and poverty that are so often part of what it means to  be labeled with a mental illness in this country.

Addressing the dismal state of health care that so many people with mental health diagnosis receive. It is a crime and disgrace that people with psychiatric diagnosis die much earlier than those without. Everyone with a diagnosis knows what it is like to be treated like real medical issues are “in their head.”

Addressing the very real issues of discrimination and prejudice that is a core element in the life of everyone who has a mental health diagnosis.

Addressing the benefits, risks and side effects of medication. Making sure that choices about medication are informed choices.

Addressing the national disgrace of the treatment of those with mental health issues in the jails and prisons of this country.

Addressing the national calamity of suicide. 

Addressing the growing issue of trauma.  Moving mental health from a whats wrong system to a what happened system.

Addressing the issue of peer support. It is clear and overwhelming that the voice of lived experience matters. What role should it play in an optimal system?

There are many more issues to be considered, Some issues translate easily into proposed legislation. Some may not translate at all and other advocacy may be called for. The important thing is to know what you are asking, ask something worth asking and have a plan how to effectively get the answer you want.

If you dont know what you’re selling the odds are no one is buying: The need for consensus

September 22, 2014 by

If you dont know what you’re selling the  odds are pretty strong no one is buying.  If the people selling are always arguing about who is selling the right thing, are they selling to the right person, and are they selling in the right way the likelihood is even higher that no one is buying. When there is a competition amongst brands the quality of each brand is important, but often the most important thing is which brand is sold the most effectively. Advocacy is many things, but it is very importantly about selling and selling well.

The strength of the Murphy Bill is not the bill itself but the skill with which it is sold. There are a lot of serious problems with the bill. Many of the posts I have written talk about them. Others have also written exhaustively on the subject. Some have argued because of its faults it is unlikely to be passed. I hope that is true but am reminded this is the United States Congress and ask myself when was the last time anyone went broke betting against the ability of the Congress to make poor, narrowly based partisan decisions.

I have a friend who believes when all is said and done the Murphy Bill will pass. He thinks it is an awful bunch of ideas but his opinion is simple. “The mental health system is terrible. If the Murphy Bill is the only option on the table, if it is the only option for change and the choice is between changing the system or letting it be many people, even if they have misgivings, will vote for change simply because they think doing nothing is a worse option.”

I think the most important task between now and the next Murphy Bill is reach some sort of consensus about the options we are putting on the table. It is to recognize that unless we agree, to a meaningful degree, about what we are selling, we decrease our chances of success. It is to agree that we cant argue against change, but must argue for a better change in order to be successful in the long run. The wider the consensus, the larger the tent the more likely it is to be successful.

There is widespread disagreement about how to proceed among many. Trying to find what connects us seems much harder than to find what divides us. The Treatment Advocacy Center has shown in state after state the power of its ability to sell its vision. If they were baseball players they would be far above 300 hitters. If we cant find a way to stand together I am afraid we will find what we stand for not as impactful as we would like.

Murphy will work harder to broaden the coalition that supports his bill. He will try to increase the amount of people willing to sign on despite their misgivings. What will be our coalition? What ideas, what vision, what positions do we share well enough and strong enough to propel ourselves forward?

During things like the Alternatives Conference and in other meetings and interactions and forums over the next months we will answer that question. Some people may decide they cant be part of any coalition at all broadly defined. They may feel like it somehow violates fundamental values they have and that is okay. But unless we find enough people willing to get on the same boat together the odds for Murphy to be successful increase. I really think they count on us to self destruct and get stuck in endless squabbling amongst ourselves.

I dont know what the consensus should be. I dont know if anyone knows. Maybe the biggest change is in deciding we vitally and importantly need to build one.

The new Murphy Bill will soon be upon us.

A culture of recovery

September 22, 2014 by

hopeworkscommunity:

From the archives

Originally posted on Hopeworks Community:

From the archives.

We seldom see more than we expect to see. More and more people talk about a recovery model. The consensus that the medical model is limited and so often part of the problem is growing stronger and stronger. Yet how does this impact what is real? We dont just need a recovery model. Those who become involved in the mental health system need to experience a culture of recovery. The need to experience a way of seeing things, a way of doing things that affirms their worth as people and treats the idea of flourishing in life as real and possible. The message sadly that many get from their exposure to the mental health is not this. They learn they are damaged, deficient and that being realistic means accepting that defiency. They learn that a lifetime of psychotropic medication is something to be expected and that the…

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Paimi rocks: bringing light to the dark side of the mental health system

September 22, 2014 by

In Tennessee the Disability Law and Advocacy Center is the home of the Paimi program.  I have been a member of the Paimi council for several years.  Below is a post a couple of years old that shows the importance of the paimi program Murphy is trying to destroy.

From the archives
There are many, many real and important criticisms of the mental health system.  One of the ones that affects many mental health consumers is rarely made.  When it is made it is seldom afforded the importance it merits.

That is on the subject of adult group homes  ( or whatever they are called in your state) for those with mental illness.  Recent reports on the system in Florida reveal a system ripe with abuse, neglect, and abuse.  Some programs described there are little more than criminal activities victimizing the mentally ill.  Other states report similiar problems.  It seems to be a widely known secret in virtually every state.  But it does not seem known enough or compelling enough to motivate much action for improvement.

The Disability Law and Advocacy Center recently  released its report on the group home system in Tennessee.  Quoting from the report:  “

The following report is presented to address unacceptable operating practices of licensed board and care homes (supportive living facilities) for persons with mental illness in Tennessee. Issues and recommended solutions found within are drawn from numerous monitoring visits, policy reviews, and dialogue with residents and owners/operators. The current lack of  compliance with licensure rules and oversight create a
risk of potentially dangerous consequences for some of Tennessee’s most vulnerable citizens – persons with mental illness residing in board and care homes. Occurrences of physical and emotional abuse, neglect, and financial exploitation may remain undetected due to inadequate supervision and monitoring and failure to take actionwhen compliance is lacking.
Residents may feel disempowered to change these situations or self advocate under such circumstances. Many lack the ability to protect themselves while others believe that they have no choices or options. All too often, residents’only alternatives to board and care homes include institutions, hospitals, shelters, jails, prisons, and even homelessness. Limited financial resources, lack of supportive family, few safe alternative living arrangements, and insufficient community resources frequently result in helplessness and passivity.”

Later on the paper adds, “Overall, the provision of services in board and care homes was found to be an illusion with many issues representing an alarming potential for harm, including abuse, neglect, and financial exploitation. During DLAC’s monitoring visits, investigators observed that persons with mental illness (residents) living in board and care homes
experience poor living conditions, lack of oversight, and greater opportunities for exploitation.”

One of the most alarming things to me is that many of these people are the same people being served in Tennessee’s peer support centers during the day.  Considerable work, planning, and effort has gone into trying to make sure that these centers met the needs of their clients.  The state puts a lot of effort into oversight and regulation to at least try to insure that programs work for the clients they serve.  If we are trying to serve the needs of people and insure their safety and chances for a better life how can we manage their days without giving the same kind of care to the places where they live?  As the report states many of these folks feel like they have no choice or options about where to live and are afraid to speak up or dont know who to speak up to.  How in the world can we let this happen?

HOW DOES PAIMI CONTRIBUTE TO YOUR STATE?

When life is hard: recovery and tragedy

September 21, 2014 by

hopeworkscommunity:

From the archives

Originally posted on Hopeworks Community:

I know people who hate talk of recovery.  Often they have a long history of mental health issues. Professionals have told them in many ways, not all spoken, that they lack the motivation and ability to make changes. Often for them treatment seems increasingly irrelevant to the conduct of their daily lives.

  Everything is hard for them.  It doesnt seem to matter how hard they try or what they try.  They hear recovery and wonder why it aint so for them.  They hear tales of how good it can be as an indictment of how bad it is for them.  The promise of joy seems hollow when your only constant companion is misery and distress.

They try to be what other people expect them to be, but are cautious about ever letting anyone else see them as they are.   One lady told me straight up.  “I dont need to…

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Getting ready for the new Murphy Bill

September 19, 2014 by

Congress has left for the election.  A lame duck session will occupy the remainder of the year.  The Murphy Bill didn’t make it over the hump.  With the new Congress will come the new Murphy Bill and with the next Congress an even newer Murphy Bill and so on. 

Several things seem obvious to me:

1.  Unless another Bill of some kind is passed there will be a Murphy Bill each year until he leaves Congress.  It will be a perpetual battle. 

2.  Perpetual battles wear people out and the odds favor him in the long run. Dr. Torrey, Mr. Jaffe and company will not wear out.  They live for stuff like this and anything that gives them a chance to get some press and some attention will find them endlessly motivated.

3.  It is essential to articulate the changes we are for, and not rely on opposing what we find objectionable.  We are much more effective if we have a viable, concrete option that we can point to as an alternative answer.  Give people something to vote for.  Give them a vision of what the mental health system can be.  Murphy portrays anyone who is against him as being against mental health reform.  We need to say we are for a better reform.

4.  This means people who are against Murphy must find some common ground from which to proceed from.  Murphy’s greatest strength is our lack of that common ground.  I think there are a lot of common agreements.  Part of the problem is that the people who seek common ground are not as verbal as those who think their way is the only real way.

5.  Murphy’s greatest strength is the stories he marshalls to prove his points.  We need to develop and share stories that show he misses the point.  In some ways it will be a competition of anecdotes.

6.  We need to ruthlessly fact check his claims.  As I have tried to show in several posts his claims just don’t pan out.  His Bill is not a fundamental reform of the system.  It is just a rewind of strategies already tried and largely discarded.

7.  Particular attention needs to be paid to the cost of his proposals.  AOT and psychiatric hospitalization in particular are big ticket items and must necessarily subtract from spending elsewhere.  The dollars matter and they will really matter in Congress.

8.  It will not be enough for us to say we want the mental health system to operate in a more ethical fashion.  We must say we want it to be more effective.  Murphy will try to dismiss the ethical argument as people who are against real change.  We have to be for “real change”.

9.  There is not nearly enough attention to the fact that state mental health budgets in last year’s have been cut past the bone.  Every state is struggling to hold its head above water.  Murphy never mentions that.  Instead he tries to blame the “worried well” and say we are trying to help people who don’t need help.  It is a classic attempt to blame the victim.  We could do a lot more to highlight the utter absurdity of his position and his immense distortion of reality.

10.  The issues he talks about like “mental illness and the jails” resonate with legislators because those issues resonate with their constituents.  To not address or to not treat them as real leaves the debate to Murphy and gives him leverage we don’t want to give him.

11.  We need to do a better and louder job articulating the vital role of Paimi.  In Tennessee it plays a vital role in the system.  Again confront the distortions of reality that Murphy makes time after time.

12.  Murphy is a political opportunist.  Confront him every time he shamelessly uses a tragedy to glorify himself or his Bill. He seems to be chronically first in line to proclaim how his Bill would have saved the lives of people tragically lost.

13.  Dr. Torrey is a ventriloquist.  Every time Murphy opens his mouth Dr. Torrey talks.  More attention needs to be given to how little professional backing Dr. Torrey has.  He is not exactly in the forefront of psychiatric thought.  And the Treatment Advocacy Center has certainly shown no reluctance to impose its vision in state after state.

14.  Murphy continually talks about AOT as if every state is New York.  It is basically dead or irrelevant in most states. It is time he be asked to explain that irrelevancy.  It is time more legislators are aware of it.

15.  Seek allies.  There are many people who agree with you about Murphy that may disagree on many other things.  Murphy is trying to seek allies.  In the end bigger tents normally beat smaller tents.

Just some thoughts.

Does it matter??

September 18, 2014 by

I really struggle sometimes with whether or not anything I do matters.  I really do and I swing all over the pendulum.  Some times I am sure that it does.  Sometimes I am sure it doesnt.  Mostly I hope.

More and more I realize the only thing I really control is whether or not it matters to me.  Does what I do say about me what I want to say about me?  Are the things I think are important the things I treat important? 

Doing better in many ways.  I still hope though.

Think I always will.

More on Cecil

September 18, 2014 by

from 2010

Cecil Cook (see “The living of Cecil Cook” on this blog) was finally put to rest today.  Close to 400 people crowded into an auditorium  intended for 225 to say their final goodbyes and celebrate the life of a man who had touched virtually everyone of them in special ways.  Cecil died in a plane crash about a week ago and for a week we have all cried and bled, each in his own ways.  The gash has been deep and painful.  A community has been changed.

Different people talked about the gifts Cecil had given to them.  In little ways he had given them big things.  One lady talked about how Cecil had shown up at her house with a lawnmower and told her he was ready to mow the grass she had never been able how to figure out how to get done.  She had no money and no mower.  He told her there was one catch.  She had to agree to let him buy her pizza before he could go ahead and mow.  Her eyes glistened when she talked.  He showed her the reality of kindness in a world that for her had shown little.  One former colleague talked about how hard it was for Cecil to get to meetings.  Anytime he passed someone having a hard time he stopped to talk.  Sometimes he just never made the meetings.  One pastor said it simply.  “Cecil taught me the secret of being a good pastor.  Never close your door.”  And in the deepest and most substantial ways Cecil never closed his.

I spoke for a minute.  And I hadnt opened my mouth and I had started to cry.  Cecil I tried to explain taught me kindness and wisdom were the same thing.  Anyone he touched learned that lesson.  I hope someday to lead the kind of life that might teach the same lesson to someone else.

I think we have to give credit to the most substantial change.  Have we been changed by Cecil’s passing…. Sure.  But we have been changed in a much more substantial way though.  We have been changed by his coming.  And that is a change that can survive his death.  Someone once told me they wanted to live for a purpose that survived his death.  We are all part of Cecil’s purpose… all those he has met and all those we meet.  In our living we keep Cecil alive.  And our stories, our living, our loving in a very real sense is the real story we tell about Cecil Cook.

May God bless.  Cecil you will be missed, but may the seeds you planted grow to be far more than the flower you were.

Transformation

September 17, 2014 by

I like the term transformation much better than I like the term recovery.  Recovery has an implication of regaining something lost but when I consider recovery I am talking about so much more than that.  I am talking about new creation.  I am talking about stepping above and finding a truth, a place maybe not really known before.  Transformation means taking what is and changing it into something so much better.  And there is no limit… No this is too bad to make better.

That is the lie of the Murphy Bill, of E Fuller Torrey, and DJ Jaffe.  They deny the possibility of transformation and if you point to them the reality of living, breathing transformed lives they dismiss with “they must have never been that bad off to begin with.”  Their vision is people who are maintained at best, that will ways be dependent on the system.  Life for them is about minimizing trouble and pain.  It is not about gain or living a life of meaning and connection and purpose. It is about adapting to your chronic biochemical insufficiency.

We need to talk much more about the reality of transformation and the ability of the human spirit in the worst of times to go above and define the circumstances rather than be defined by them.  We need to talk about life defined, not by what is hard or difficult for us, but by what is important for us and about us.  We need to say to Murphy, Torrey, and Jaffe you are wrong and I am the proof, because if you were right I would be impossible.  We need to say that fundamental mental health reform is not about attacking or imprisoning the people poorly served by the system but in creating a system that offers the tools and experience to help people transform and manage their lives in a way that affirms their worth as human beings. 

Our real impact must be more than what we are against.  The mental health system needs a vision that sings of the reality of hope and better life.  Share that vision with everyone.

The Living of Cecil Cook

September 16, 2014 by

hopeworkscommunity:

Cecil died several years ago. He was a best good friend. We are fast approaching the anniversary of hia death. This post was about his life.

Originally posted on Hopeworks Community:

You meet very few incredible people in this life.  My good and great friend Cecil Cook was such a person.

They called this afternoon.  He died in a plane crash yesterday.  He was the only one aboard a small plane.  They dont know what happened, dont know when they will.  They said he was literally minutes away from a safe place to land.

Today has been numbness and tears, both without warning, in moments forever, like a terrifying dance. I try to tell myself that he is in a better place and how lucky I was to know him, when so many didnt have the honor, but I feel ripped and torn and life a little less in some important way I dont understand.

Cecil was a good person in a way that goodness really means something.  Kindness was for him not an affectation like it is for some people. …

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If the mental health system was sane…

September 15, 2014 by

hopeworkscommunity:

From the archives. Seems appropriate right now

Originally posted on Hopeworks Community:

There would be a range of services availible reflecting the human needs of those it serves.

Those services would be availible to those that need them.

Those services would be based on what works, not what makes money, reflects any particular philosphy or interest, and not because it is what we are used to doing.

Asking for help would not label someone, brand them, be a cause of shame, a source of discrimination. Asking for help should not be a problem.

It would realize that lack of a place to live, lack of food, lack of adequate clothing, lack of a job are frequently barriers and problems for the people they serve and address them in a direct and effective manner.

It would know that inadequate health and inadequate health care are common problems for the people they serve and be part of an effort to serve the entire person…

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What are we for?

September 15, 2014 by

I have written many, many posts about why I think the Murphy Bill is harmful and ultimately fraudulent in the figures it uses and claims it makes.  I have read very persuasive pieces from others.  Yet Murphy/Torrey/Jaffe have a strength that very few of its critics have.

They are for something.  They have a vision, however appalling I find it, of a system they think will work.  They have been able to articulate it in concrete terms and convince large groups of people it is a possible solution to the problems they or their loved ones face.  They have convinced legislators in state after state that something like AOT is needed in their state.  Now they are on the national level and they may win.  It does not matter the law is nonsense.  This is the Congress.  When has that mattered?

People know what we are against.  We are very clear about that.  But destroying the Murphy argument is not the same as presenting our own argument.  We need a vision that can be presented as a more humane, more effective option.  Partly because of our own divisions we lack that.  And because we lack that Murphy moves on.  It is much easier to find a place in a vacuum and he is trying to fill a vacuum.

Quite simply we need to articulate something better and we havent.  Murphy/Torrey/Jaffe are consumate salesman and eventually if we dont show we have something better to sell we will lose again.  We are often not too kind to each other and I sometimes wonder if our greatest obstacle is not Murphy, but each other.


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