Recovery Learning Communities – January 2008 meeting materials here!

Wonderful ideas were contributed by all who attended the second meetings of the NLCMH Recovery Learning Communities in January.

This meeting focused on two issues: 1) what the official NLCMH definition of recovery should be; and 2) what can be done in the next six months to make the environment at NLCMH based on recovery.

From the complete list of people's ideas, some thoughts about defining recovery include: hope, healing, trust, kindness, respect, dignity, a journey, a process, having a meaningful and worthwhile life of purpose, being happy or satisfied with your life. People also considered a variety of formal definitions by national organizations and experts and gave their opinions on what was good and bad about each of them.

A few of the exciting ideas about recovery-oriented environments include: establishing peer centers and learning libraries, employing more peers, having art, photobiographies, banners and other things in the offices which announce that you are entering a recovery zone, and making our communities more recovery-oriented. A number of suggestions were made about specific things that can be done in the next six months to surround both staff and consumers with the possibility of recovery.

If you missed the meeting, here are the two handouts:

Poster Boy

A young man in his 30s sits at the table perusing the latest copy of Time magazine. He is a very good looking man with bright eyes and a ready smile. When he speaks, he is articulate - very well spoken. He is also, by the way, schizophrenic. Let us call him Ron.

Ron and I are sitting in a house funded by Mental Health where a variety of programs are offered for the consumers - all people suffering with Mental Illnesses. Currently, some funding has come their way to make a series of videos on living with a Mental Illness.

One of the staff is trying to get Ron interested in appearing in the video. Another is leaning close to me whispering: "See what you can do to get Ron to be in the movie. He would be perfect!" They already have 5 or 6 *actors* who are very eager to appear. They are not among the highest functioning clients but they have great enthusiasm for this project. Ron is looking uncomfortable and asks me to go for a walk with him.

As we amble down the lane he tells me that every time he goes to this place it is the same story.
He is feeling pressured.

"I don't want to be in a movie. I don't want people labeling me. I am more than my illness. I don't want to be the Poster boy for schizophrenia."

In that moment I realize his assessment is right on the money.
They want a Poster boy; especially one as eye-pleasing and charismatic as Ron is.
They want him so badly that they are forgetting one of their own tenets: to let the client be who they are and allow them to express themselves as they wish.

As I drop Ron off he thanks me and says he does not want to go there anymore.
Later, a volunteer for this Society tells me that most of the high functioning clients do not find a peer within the House. Most of them stop coming after a few visits. The people at the top of the food chain view it as them expressing their recovery.

I view it as another pothole in the Health Care system.
Preaching to the converted.

Dr. Freeman’s Lobotomy

From Mental Hero:

This story makes me sick to my stomach. A couple nights ago, I watched American Experience: The Lobotomist on Public Television. The procedure itself has a great deal of ick factor, but even more alarming is how Dr. Freeman was able to invent and then cavalierly practice his procedure without scientific method, or peer review, or even a surgeon’s license. From now through January 25th, 2008, you can ask questions in an online forum of people who appeared in the program, including Dr. Freeman’s sons, and the daughter of a woman who was apparently cured of her depression by lobotomy. Don’t let this opportunity get away!

Resources on Parity

Resources on the mental health parity bills from the Congressional Budget Office:

CBO score on H.R. 1424 (Commerce), 11-21-07: http://www.cbo.gov/ftpdocs/88xx/doc8837/hr1424e&c.pdf

CBO score on H.R. 1424 (Ways & Means), 10-4-07: http://www.cbo.gov/ftpdocs/86xx/doc8679/hr1424w&m.pdf

CBO score on H.R. 1424 (Ed & Labor) 9-7-07: http://www.cbo.gov/ftpdocs/86xx/doc8608/hr1424.pdf

CBO score on S. 558, 3-20-07:

http://www.cbo.gov/ftpdocs/78xx/doc7894/s558.pdf

MLK and Mad Pride

USA Officially Celebrates the Life of Rev. Martin Luther King, Jr.

MLK called for "International Association for the Advancement of
Creative Maladjustment" (IAACM)

TODAY: Patch Adams, MD Agrees to be New Chair of the "IAACM"!

~~~~~~~~~~~~

This day, 21 January 2008, is the official national holiday in the
USA to celebrate the life of Rev. Martin Luther King, Jr., who would
have turned 79 last week.

Just moments ago, Patch Adams, MD phoned up MindFreedom International
from his home in Virginia. Patch agreed to be the new chair of a
dream MLK had that never came true:

The IAACM.

That's the International Association for the Advancement of Creative
Maladjustment, not the International Association of Air Cleaner
Manufacturers.

Patch Adams is the internationally famous psychiatric survivor
physician/clown who was portrayed by Robin Williams in a film about
Patch's life.

Repeatedly, in the last two decades of his life, Rev. King said in
speeches and essays that he was proud to be "psychologically
maladjusted" to oppression, war and poverty.

MLK said the "salvation of the world lies in the hands of the
maladjusted!"

More than 10 times MLK said the world desperately needed a new
organization, the International Association for the Advancement of
Creative Maladjustment (IAACM)!

As far we know, the IAACM never officially formed. Time Magazine
called it a "half joke."

But last year, in 2007, MindFreedom International helped launch the
IAACM at its international conference as part of the "Mad Pride"
movement that celebrates the right to be nonviolently different, odd,
crazy, nuts, strange, weird, or whatever term society would like to
toss our way.

Who else could have intentionally and consciously formed the IAACM,
in reality, other than psychiatric survivors?

The Mad Pride movement asks you a simple question:

By MLK's 80th birthday in 2009, what action will you take to show
your "creative maladjustment"?

For a decade "Mad Pride" celebrates each and every human being's
creative uniqueness and right to be nonviolently different, including
we people who have survived the psychiatric system. Like Gay Pride,
Mad Pride events have included parades, theater, "bed pushes,"
concerts and more.

Patch announced the paradox today that as official honorary chair he
would like to have the IAACM "as non-hierarchical as possible."

Patch said the main quality he would most like to celebrate is,
"Insane persistence! Never, ever give up. I am crazy every day. Stay
nuts!" Patch travels the world 300 days of the year spreading his
message of maladjustment. In 2008 he will be in Haiti and Darfur
among other places literally dying for a new kind of normality.

As long as you follow MLK's nonviolence guidelines, *YOU* are a
leader in the IAACM!

Your suggested long-term goal: Millions upon millions upon millions
-- okay billions, why not -- of people engaged in creative acts of
cultural disobedience! Hey, we're in a global crisis -- get grandiose!

~~~~~~~~~~~~~~~

MARTIN LUTHER KING, JR. ON "NORMALCY":

"The only normalcy that we will settle for is the normalcy that
recognizes the dignity and worth of all of God's children.

"The only normalcy that we will settle for is the normalcy that
allows judgment to run down like waters, and righteousness like a
mighty stream.

"The only normalcy that we will settle for is the normalcy of
brotherhood, the normalcy of true peace, the normalcy of justice...

"We must come to see that the end we seek is a society at peace with
itself, a society that can live with its conscience. And that will be
a day not of the white man, not of the black man. That will be the
day of [hu]man as [hu]man."

-from MLK's 25 March 1965 speech in Montgomery, Ala.

~~~~~~~~~~~~~~~

LATEST MAD PRIDE 2008 NEWS!

IAACM actions can be about anything. You don't need a psychiatric label.

For example: Even a few people together can do public "cultural
disobedience" about something to which we ought to be maladjusted,
nonviolently, and take a digital photo, get it out. You've done an
IAACM action!

As usual, though, people with psychiatric labels are leading the planet!

Mad Pride "IAACM" actions for 2008 have been announced already been
announced in seven nations!

For example, there's the third annual "Bonkersfest" in UK which
gathers together thousands for music and costume and strangeness.
Three thousand people participated last year, and far more are
expected this year. This year Bonkersfest will be on the site of the
actual historically infamous "Bedlam" psychiatric institution!

A number of nations are holding "Bed Pushes." This is where
individuals dressed in patient garb help push a bed through the
streets to "escape" people dressed as psychiatrists carrying huge
needles. The public loves them, the psychiatric industry not so much.
Past Bed Pushes have won national media in UK, along with publicity
in Canada and the USA. This year Berlin has announced a Bed Push, and
more are expected.

A new innovation in the Bed Push announced for Oregon: MFI mad
scientists are developing huge pill or capsule props to help roll
after and "chase" the bed, symbolizing the overwhelming power of the
psychiatric drug industry. Stay tuned.

Your Mad Pride action shows your creative maladjustment, and does not
have to be big.

Yes, there are some major events planned, including theater events in
Toronto; concerts in Australia; an annual campout protest on the
grounds of the Capitol in Albany, NY; annual street marches in Accra,
Ghana; normality screenings once more at the huge Oregon Country Fair
(more than a thousand done, no normality found yet).

But small events are as important! Even two or three people can take
a Mad Pride nonviolent action by, say, holding up a sign publicly
with your unique message, taking a digital photo or video, and e-
mailing it into MindFreedom at pride@mindfreedom.org or uploading it
to YouTube. Include a caption. Use the IAACM tag. Be creative!

Or you could do a public skit, such as that "Normality Screening"
inspired by the Patch Adams clown troupe in Florence, Italy. This is
an "airport-type" screening for normality using a rubber chicken,
white coat and red rubber nose. People love these! MindFreedom has
held more than 1,000 normality screenings, including at the entrance
to the American Psychiatric Association headquarters. Normality is
never found.

Let us know your hopes and dreams for your Mad Pride event at
pride@mindfreedom.org. Both labeled and unlabeled are all welcome to
lead.

Post Traumatic Stress Has Trebled Among Combat-exposed Military Personnel

There has been a threefold increase in new cases of self reported post-traumatic stress disorder symptoms among combat-exposed military personnel since 2001, according to a study published on bmj.com.

Concerns have been raised about the health impact of military deployment. Studies have estimated as many as 30% of Vietnam War veterans developed post-traumatic stress disorder at some point following the war and, among 1991 Gulf War veterans, as many as 10% were reported to have post-traumatic stress disorder symptoms years after returning from deployment.

So researchers in San Diego analysed the effect of deployment on over 50,000 military personnel who were taking part in the Millennium Cohort Study (a large 22-year study of the health of US military personnel).

Presidential Candidates Answer Mental Healthcare Questionnaire

The National Alliance on Mental Illness (NAMI) has released the responses of five presidential candidates to a detailed questionnaire about mental healthcare issues.

"Mental health is part of the national dialogue on healthcare," said NAMI executive director Michael J. Fitzpatrick. "We offer the candidate responses as part of the process of public education."

"One out of four Americans are affected by mental illness at some point during their lifetimes. It does not discriminate between Democrats and Republicans."

- Specific answers to 24 questions have been provided to date by Hillary Clinton, John Edwards, and Barack Obama.

Mental Health Parity: Why it’s not a hot political topic

Before I was diagnosed with depression and realized that I suffered from a mental illness, in my mind the most vital issue in terms of health insurance was whether I had it or not. I think you’d find that’s the case for nearly everyone in America. If you have good health insurance, for the most part it’s not something you think about, and you’re pretty darn thankful that’s the case.

However, once I started treatment for depression I became aware of one of the ugly aspects of the health insurance coverage I had thought was so complete. Not only were there limits on my mental health care in terms of number of visits allowed, both annually and for my lifetime, but my co-pay was higher for mental health visits than for other types of care. And I’m not just referring to talk therapy, which is always a 50 minute long appointment. Even a 5 minute medication check with my psychiatrist cost me more than a 45 minute long appointment with my gynecologist.

Reinvigorated

I’ve been working as a peer specialist for several months now–without actually being certified.

This month, I am finally getting the certification training.

I was already excited about that–finally getting the training–but this afternoon, that excitement just ratcheted up a notch. Because this afternoon, I found this: Mental Health Recovery.

It is module 2 of the peer specialist training curriculum by Recovery Innovations (formerly META).

Recovery Innovations was only recently approved to be an official training vendor for peer specialists in Pennsylvania. There are now two approved vendors: Mental Health Association of Southeastern PA (MHAPA), and Recovery Innovations. And to be honest… I was feeling slightly sorry for myself, that I wouldn’t be going through MHAPA’s training. After all, everyone else I know who’s been through the training went to an MHAPA training. And all those people LOVED it, thought it was great, learned so much, had a wonderful time… et cetera, et cetera.

So now, a training comes along–one I’m at last able to get into–and… it’s not MHAPA. It’s Recovery Innovations.

Hmph.

It felt anticlimactic.

There was this little tiny piece of my brain saying, “This better be good.”

How judgmental. Really.

Visions of Recovery

From Gerald Butler:

1/13/2008

On the 18^th of this month, noted schoolteacher and author of ‘Blue Eyes Brown Eyes’ Jane Elliott will be lecturing in Howell Michigan. For those too young to remember: Ms Elliott was a third grade teacher when Martin Luther King was assassinated and the next day she conducted the first of her now world renowned Blue Eyes Brown Eyes experiments. Desiree Cooper of the Detroit Free Press refers to these sessions as ‘Experiences’ during which the children’s treatment was based solely on the color of their eyes. Blue-eyed kids had to sit in the back of the room, and even had to be escorted to the bathroom by brown-eyed children. For the entire day, lunch and recess included, the blue eyes were generally debased and had to deal with constant reminders of how they were lesser than the brown eyes.

Typically at Mental Health conferences it seems to be, consumers in the back and staff up the front, almost as if it were mandated. When putting together last years ‘Empowerment Day’ conference I requested consumers sit in the front of the venue and staff in the rear. This was a mere symbolic gesture to deal with stigma and I had no intentions of enforcing it. I was generally watching for reactions to the request and for outcomes. I was not surprised to see consumers end up in the back and staff in the front. What is obvious is that for transformation to occur there need be a system wide change of attitude, consumers and administrators alike. I’d like to think that future generations would judge this era not by some super new program, but by an age of cooperation. Either we all are going to make this a success, or we all are going to be losers.

I can’t speak for administrators but from a consumer’s perspective this is how we can contribute to system transformation: we must first envision ourselves as being deserving of sitting in the front section. We must find what our talents are and then find the leaders in the system willing to help us hone our gifts. We can never make our pasts go away, however we can turn that poison into medicine to help heal others going through what we have been through We have been told that everything we do, everything about us is wrong, including our deepest feelings. So we must be willing to take an open and honest look at ourselves from our perspective, the bad and MOSTLY the good and be willing to fix whatever needs fixing.

To err is human and everyone makes mistakes. While in recovery it is vital we surround ourselves with progressive folk who believe in us, as it is they who will help us rebound from life’s missteps. The sooner we rebound the sooner we are free to put all our time and effort into the recovery process. We must seek out those positive leaders in the system willing to say to us “You’ve made a mistake, lets work together to make certain that you’ll do things right the next time? It is a bit unfair to ask others to respect us if we do not respect ourselves. So we must walk with our heads held high because after all that we’ve been through, we owe that much to ourselves. We need to find the leaders who also feel we deserve to walk tall.

The last great change in mental health was the community based treatment initiative, begun in the 70s’. This was basically a physical change and I can’t imagine the logistical nightmare it was to pull it off. This new system is just as big a change as was community treatment, however this is more a system wide change in attitude and approach that assures we do well on the road to recovery. It’s exciting to be in the middle of such revolutionary transformation: almost daily I meet another administrator who has boarded the freedom train by making some sort of personal commitment to system transformation. Finally, we are no longer separate from the system of treatment and recovery, but are instead important contributors to the entire process. We are forever grateful to those leaders who have made our concerns, their concerns.

Retailers Lobby for Mental Health Parity

The National Retail Federation hired Washington Council Ernst & Young to lobby the federal government for equal health insurance coverage for mental and physical illnesses when policies include both, according to a disclosure form.

The Series

I am sick of seeing Television shows like Seinfeld and ER that stigmatize persons with mental illness. I have seen so many prime time drama series about doctors, police officers and lawyers. I think there needs to be a prime time series about Community Mental Health, set in a CMHC. So I tossed some ideas down as I doodled on a note pad at work one day. The story of a desk receptionist dealing with clients at the window, case-managers, clinical liaisons, blue dots, rehab specialists, psych doctors, and psych nurses, that gives a human face to both persons with psychiatric conditions and those who are mental health professionals. The script writers, such as myself, would have to be writers who know the real mental health system, family members, consumers, and mental health professionals that can portray a non-stigmatized view of mental health. Of course there would the ethical crusaders in the mental health system tangled in disputes with unethical staff that undermine the very concept of integrity. (as we have seen this on every other prime time drama series). There can be moments of light hearted comedy (like other shows). But in this series the person with schizophrenia does not murder the two doctors during a hospital holiday celebration like we seen on one season of ER.

Steve Morgan: Recovery & NAMI

I am writing this letter as a plea for reconciliation amongst those of us who have psychiatric diagnoses, those of us who issue them, those of us who have family members with them, and those of us who work toward related policies. As we are all aware, there are multiple tensions that exist amongst differing organizations within the mental health world, but I truly believe that if we can all begin to have a compassionate conversation, we will find a healthy common ground between our sometimes conflicting ideologies.

I specifically wish to address NAMI.

Visions of Recovery

From Gerald Butler:

1/3/2008

A few weeks ago Visions visited the newest Clubhouse in Wayne County and the “Network” clubhouse is off to a really great start. Angela Fuqua (Clubhouse Unit Leader) is someone who was also my counselor 13 years ago when I was in treatment. Even though she was an administrator at the time, Angela was practicing a form of Peer Support even then: she would say to all who would listen recovery is possible. Over the few hours we were at the clubhouse, Ms. Fuqua continuously stressed that the clubhouse belongs to the consumers; it is run by consumers and designed solely for consumers benefit. Having once been a consumer herself it is easy for her to empathize with those we serve. I know the high value consumers place on such factors as, integrity, and heartfelt concern”. Angela Fuqua

At a recent Peer Choices meeting, Jeff Brown (Exec. Director/ Oakland County CMH) told the group that his role was solely one of support. He basically told them to put their hopes and dreams into a workable form, and he would do all he could to make them a reality. Jeff demonstrates confidence and trust in consumers to make good decisions, thus encouraging them to become independent. Consumers then ‘pay it forward’ by spreading the message of recovery on to other consumers. This is how we contribute to System Transformation “Success in the lives of those we serve must be the measure of our success”. Jeff Brown

Just as in every other culture in the world we too talk among ourselves, and the word on the street is Marti Bush (Director/ Public Relations/ Gateway) is spreading a ton of love, hope and encouragement among the recovering community. In fact every consumer I talk with who has had dealings with her come away feeling as if they were treated specially. It is recommended that administrators not get close to their clients but that does not rule out having a heart, and Marti certainly has shown how big a person she really is.” I do what I do because I have seen the important role self respect and dignity play in a persons recovery process, and the more consumers I help, the better I feel”. Marti sees us as people with solvable problems, not statistics.

Although Barry Broden (Detroit Wayne County CMH) is not a consumer, he is a model of ‘System Transformation’. Since the consumer band is solely based on the principle of “Peer Support’ everyone involved with us somehow grows. Being the only one in the band with any formal music training it is only right that Barry be the musical director. The first thing Barry does is sincerely listen to what we have to say regarding the direction we want to go, and what music we play. He then PARTNERS with us in support of making our dreams a reality. Our dream is to deal with stigma through our music by showing the world that when consumers are properly supported recovery is expected. "The general population is guilty of shooting themselves in their collective feet every time they/we fail to recognize and encourage the talents and potential contributions of consumers." Barry Broden

These are just a few examples of System Transformation as recommended in the ‘Presidents New Freedom Commission Report’ which states: the leaders of a transformed system of treatment must be dedicated to the concept of recovery. These are folks who’ve made some sort of personal commitment to system transformation, and the entire system grows as a result of their dedication. Although the work these folks do is vital to us, they cannot be paid for what they do as the system cannot mandate that someone care about us. I wish I could explain why but I do know that the more positive the environment we are in, the better we do in recovery.

Actually I am proud to be part of these historic changes in treatment and recovery and I feel that in the future this will be known as the ‘Age of Humanity”. More and more people are starting to accept the fact that we are human beings in need of healing and as more individuals in the system apply basic humane traits, the better we will do in recovery. Empathy, openness, integrity, caring, dignity and respect: there is no longer any doubt as to the vital role these traits play in the recovery process not only for us but also the entire system. As more grand programs and new innovative methods are implemented, we must not forget the role compassion plays in recovery.

Gerald Butler

CPSS

Consumer Advocate

Reforms sought in restraint of mentally ill at state hospitals

Eight incidents of inappropriate force and restraint have been documented at four state psychiatric hospitals since July, prompting an advocacy group Monday to call for reforms.

In Michigan, hospitals can restrain patients only with physicians' orders. They must be checked every 15 minutes to ensure they aren't hurting themselves and to prevent instances such as the 2006 death of Timothy Souders while restrained in a Michigan prison.

The state's Office of Recipients Rights, which investigates complaints, has recommended hospitals stop the practice, but the suggestion has been ignored, according to the advocacy group that is federally mandated to protect the rights of people with disabilities.

"This abuse can no longer continue," said Elmer Cerano, executive director of the Michigan Protection & Advocacy Service. "People's lives are at risk."

State health officials say they are aware of the issue and are working to correct the problem.

On My Way To Work

I've gotten 2 phone calls today from our community services board. Both have to do with meetings I need to attend where I will be the speaker for those meetings. I am both nervous and excited. The most public speaking I have accomplished in my 47 years has been within the walls of a classroom, or a church group; the latter was years ago when I was much younger. My ability to stand before a group of people nowadays has not been tested in a while.

On January 16, I will be speaking at the Mental Health Substance Abuse and Care Coordination Meeting. What a mouthful! The title of this group is basically the same as the action they take in the community.They coordinate the care of those who have mental illnesses, and/or substance abuse issues.

I will be sharing with this group a little about who I am, and what my purpose will be in the workplace. I will also share a synopsis of the training I received at the grand hotel and conference center, during those two weeks prior to Christmas. By the way, before I hammer on here, I will be attending numerous trainings which follow the first I received. No, I do not think that 2 weeks of training is enough, okay? I say this just in case some are wondering...

Use of Neuroleptics with agression

From MFI:

NY Times on 4 January 2008 revealed a recent research that showed
that neuroleptics can actually increase rather than decrease
aggression, in a study of individuals diagnosed with cognitive
disabilities.

Overuse of neuroleptics in youth

From MFI:

* PBS: USA national television show PBS Frontline *this* Tuesday, 8
January 2008 will investigate the massive increase of neuroleptic
drugs being given to children.

MENTAL HEALTH PARITY: Researchers Stress Importance Of Out-Of-Network Benefits

In a study published December 18 on the Health Affairs Web site, researchers say that passage of either the Senate or House version of this legislation would constitute a major improvement over the current 1996 Mental Health Parity Act, which only guaranteed equal annual and lifetime payment limits. However, the authors also warn that parity legislation could actually reduce access to MH treatment for some patients if it does not facilitate treatment by providers outside insurers’ networks.

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