When a consumer dies

For the third time in the 8 years I have been a peer specialist a consumer with whom I have been associated has died. Each time there have been warning signs and each time I tried to offer support. As an atheist I see death as a finality, the nothingness into which we will all vanish at some point. It is not something to rejoice in hoping to overcome the sorrows of life. I do not look forward to seeing anyone in an after life. Which is why I tell people cling as tightly as you can to the one, wild precious life we are given.

But sometimes their grip on life is loosened by circumstance beyond our control. Often by the time I meet consumers they have experienced trauma, neglect and abuse. Often they have lived on the street and endured frost bite, extreme heat and everything in-between. You try and tell people to take better care of themselves but ultimately the decisions they make are theirs. And whether and how long they survive is up to them.

Thinking about this I posted reminders to my facebook friends about doing something fun. The time is now to create positive memories for one another. I would hate for us to part in anger and then learn that it was too late to repair the hurt feelings.

Even though I know instinctively we are not going to be able to bring everyone with us on the road to recovery it is always hard when someone leaves us far too early in life. Let those of us who remain redouble our efforts to live healthy and productive lives.

Women in recovery are so attractive

At the Empowerment Days in Madison there were women of all types including women I had known before and liked. Here I had just had my birthday and a disastrous  short relationship. Shouldn’t it be time to think about finding someone new? Who would understand me more than another woman in the same boat as me? We were talking and learning about ourselves and the struggles we faced.

And you know what? It didn’t happen because I never wanted to go there. In that three day struggle together for recovery I never asked one of them about going out together. However one of the most difficult struggles I have witnessed is people in recovery seeking relationships.

Recovery from anything. Mental health issues, alcohol, homelessness or even generic broken-ness. Everybody is recovering from something. At Grassroots Empowerment, you have the opportunity to recover from all of them.

I actually spoke with a young woman and an older man who were problems with one another. I decided that the problem was fairly basic: they didn’t like each other.  I didn’t like him, either. Since she was just barely older  than my great nieces and my great nephew, I decided I would listen before uttering the magic words: “you people don’t like each other.” Yes, it really is okay not to like other people, even co-workers. Because we’re all very different.

I told the woman I rode to Empowerment Days with “it’s not you, its me.”  I sounded like a character on “Seinfeld.” She was a Republican from Waukesha, for crying out loud. I am a Milwaukee oddball.

I’ve seen people pursue one another while risking everything. I know because I was once one of them. Today is a new day but I still see people behaving in their old ways. Like the song said, “when will they ever learn?” Wouldn’t it be wonderful to fight for a new life beyond what we are experiencing with the same or even greater determination that we use in going after relationships?

Related articles

• Schizophrenia: A Recovery (ladyprecious.wordpress.com)
• Stronger Empowerment Day (myfoxny.com)

Speaking up at the mental health redesign meeting

Yesterday I received an email about the mental health task force continuum of care action team meeting. I scurried out to the Milwaukee mental health Complex this afternoon. Although I arrived late I had a major impact. As is customary with these kinds of meetings, I added a little local color. This is due to my background  as a Certified Peer Specialist of Puerto Rican heritage. Combined with Polish, of course.

For those who may be unaware, there is a major expansion of Peer Specialist services underway throughout Milwaukee. Employers are posting positions for certified peer specialists and there is a scramble to locate the certified peer specialists who are either unemployed or working outside the profession. At the same time we  also need to assess the strengths and weaknesses of Wisconsin peer support system. This reflects the concerns expressed during Empowerment Days  in Madison.

We are rapidly evolving from a peer specialist model in which one agency hired the majority of the peer specialists and provided a lot of the training to one in which many agencies hire peer specialists  and another entity provides the training. Under the laws of capitalist supply and demand, the increasing number of peer specialists will force lower paying agencies to raise their wages of be left with the lower skilled workers.

At the same time, we need to pay more attention to the problem of peer specialists as employees. One of my recommendations to the Continuum of Care Action Team is to focus more effort in that area. I brought out examples of peer specialists who were extremely poor listeners and did not last long as employees. We need to create support groups in Milwaukee and possibly other cities where peer specialists can talk among ourselves. In addition we need  to create a telephone line people can call to talk with someone about their professional struggles with someone who has experience in the field. This is the natural evolution of our profession. As the Wisconsin motto says, forward.

Related articles

• The Relationship between Mental Health and Crime: Links and Resources. (drjezphillips.wordpress.com)
• Re-designing mental Health (kenyatta2009.wordpress.com)

One last speech at Empowerment Days

I gave a brief talk at our press conference at the State Capitol on Certified Peer Specialists. and I talked about the principles I used in providing peer support.

1. Avoid retraumatizing peers by minimizing the number of times we need to call the police and utilizing Crisis Intervention Team officers whenever possible.

2. Treating people the way that I would wish to be treated because I remember my experience as a participant in a recivery program.

3. Offering peole the right and opportunity to recover.

These were the keys to my recovery:

1. Finding a meaningful role for myself as a peer specialist which gave me an opportunity to look forward instead of mourning the jobs that I had lost and the marriage that had failed. I know that the marriage collapsed lsrgely as a result of my own mistakes.

2. I have found friends and colleagues at work and around the State through Grassroots Empowerment Project.

3. I give back to others what I have learned about what works and it’s so much more than simply taking medication. It includes exercise, access to sunlight, avoiding addictive behaviors and participating in the community.

4.Educating myself by talking with peers, clinicians and policymakers.

5. Finding comfortable surroundings so that I can feel safe and secure.

That is my vision of what being a certfied peer specialist is all about. I wish the same for everyone who is seeking recovery to have access to someone like me in the community.

 

Tonight’s speech to policy-makers

I am Kenyatta Yamel a certified peer specialist in Milwaukee. I have 8 years of experience as a peer specialist working in supported apartment programs developed to fill the gap of safe affordable housing for people living with mental illnesses. I was also a peer specialist at the Crisis Resource Center that was created as an alternative to hospitalization.

I am a Vietnam era veteran which was a key factor in my recovery from mental Dis-Ease. After experiencing a series of losses, including jobs, my marriage and my housing, I turned to the Veterans Administration for help 10 years ago. While I was living in veterans housing I learned about peer support. I joined a committee that was meeting to develop peer support in Milwaukee and Waukesha County. The fact we have come this far is a testament to survival.

Because of the low wages I earned, I was unable to secure safe affordable housing, even being evicted from a slum dwelling. The roaches followed me to my next residence, which was incredibly humiliating. My teeth deteriorated and started to bleed due to the lack of dental insurance. And I had to rely upon food stamps and financial aid from college to pay my bills. I was often miserable and depressed. And I was truly a candidate for anti-depressants.

I don’t want any more peer specialists to endure these kinds of horrors. We need livable wages so that we can afford our medication or wholistic health services. We need position that offer professional respect and collaboration with clinicians and most importantly our peers. And finally we need to be able to see peer support as a chosen profession not one into which we were thrust by accident. We embrace certification the way we help our peers embrace recovery.

I tell consumers to look upon diagnosis as a snapshot. So it is with tonight. I want everyone to think of this gathering as a picture. Remember this picture when you look back 5 years from now on how far we have come. With your help, we will go there together. Thank you.

Related articles

• The fight for peer support is not over (hopeworkscommunity.wordpress.com)

In my own voice

I was getting antsy waiting to do my presentation and feeling tortured by the discussion of the issue certified peer specialists. What did this issue mean to me? Who was I before I was certified? Who am I now? What is my vision of recovery? Where do we go?

I did an improvised version of my presentation in front of the Grassroots family this morning and I probably spoke for around 7 minutes. Tonight I will be giving a somewhat more concise version a couple of minutes briefer. And I statrted working on my notes. Then tomorrow I will talk with legislators. This legislative process is a little tricky because my former State Senator G. Spencer Coggs is now City Treasurer Coggs. And my State Representative is Tamara Grigsby who is retiring for health reasons. I’m going to accompany a friend meeting her representatives and I plan to visit the staff of JoCasta Zamarripa who I have met. I want to start spreading the news.

As it happened the ideas were all there in my lived experiences. As a poorly paid peer specialist I had been evicted, I had been judged according my ability to clean and I had been subject to what I considered arbitrary restrictions by clinicians. And now that I am certified do I want to join an organization that I fundamentally distrust? Is that the reality behind the promise of certifying peer specialists?

It all came together as I was starting to speak, words found themselves inside of me. This was what 8 years of hard work had brought. I think of the Bruce Springsteen song and the line “I’ll wait for you; if I fall behind, wait for me.” Peers, I am waiting for you. Are you coming?

Punished for working

V.I.D.A. (Photo credit: Pensamentos Filmados)

This may seem like an oxymoron but often the best response to crippling mental illness is to work. When we were reviewing information about peer specialist programs, the things we saw about the impact of work  really jumped out at us. It turned out that one of the best things to do in recovery was to find or seek employment. I have a friend who got into the school system and began a career that offered her help when she needed it and has been able to survive the budget cuts that have eliminated positions at so many public schools. I used to go to meetings where the benefits that the school system offered its part-time employees were called “cadillacs.”

That is to say, there is no private sector equivalent to treating workers  with respect. Naturally, the first thing Scott Walker did was to attack those very benefits that help workers stay on their jobs.

So here I am years and even more than a decade after our divorce I am still thinking about mental illness and recovery from a woman who taught me more about either than any psychologist or psychiatrist I ever consulted.There is a stigma attached with mental illness at a time when there are more people than ever being diagnosed. And there are stories of those who are receiving benefits for mental health disability who are struggling and seeking employment finding their benefits eliminated or greatly reduced and facing hardship as a result.

Those of us who are working as peer specialists are facing hard times as prices for the things we need rise more than the benefits we receive. If you are poorly paid, food stamps can help you keep food on the table, but the cutoff point eliminates benefits for the near-poor in order to shelter billionaires from their fare share of the tax burden. And there is a wide gulf in between being assisted by what remains of the social safety net and the abyss into which we send people who are not deemed worthy of  our help under the current social welfare system.

Related articles

• “People recover from psychotic disorders all the time, all over the world.” Our mental health system’s denial of this costs lives (kenyatta2009.wordpress.com)
• Pat Deegan – people are punished for going back to work (recoverynetworktoronto.wordpress.com)
• A Time to Sing: Coping with Mental Illness (stacysflutterings.wordpress.com)
• Diagnosis: A double edged sword (kenyatta2009.wordpress.com)
• Misconceptions ‘about insanity’ (bbc.co.uk)

My Empowerment Days Presentation

I will be making a presentation at Empowerment Days next week based upon this position paper I helped to draft

Certified Peer Specialists

For consumers of mental health services the support of Certified Peer Specialists has proven to be one of the most effective strategies for achieving and maintaining recovery.

Certified Peer Specialists provide consumers with emotional support, understanding, empathetic listening, and hope for a better future.  They serve as a role model that recovery is possible for all. They also provide practical assistance by teaching and supporting a person to access:

• Housing
• Transportation
• Social networks
• Crisis supports
• Personal advocacy (self-help)
• Education / employment
• System Advocacy

Certified Peer Specialists have been shown, through numerous studies, to dramatically improve outcomes for consumers. The cost saving to mental health service providers has also been well documented.

The Problem

The majority of agencies and organizations used by mental health consumers have failed to integrate Certified Peer Specialists into the service system. Instead, the mental health system has maintained it’s over reliance on expensive, often less effective treatment options such as psychiatrists, hospitals and county-run crisis centers geared toward crisis management rather than crisis prevention and recovery.

For those agencies that have chosen to hire Certified Peer Specialists, there is a shortage in the workforce because training and preparing consumers to become Certified Peer Specialists has ended.  In these cases, we are now left with high demand and low supply.

The field of Certified Peer Specialist is still relatively new.  Because of that, there are no current standards or mandatory training for providers who employ Certified Peer Specialists This has created vast inconsistencies in Certified Peer Specialists job descriptions which have led some Certified Peer Specialists to be expected to perform duties outside of their scope of practice or the primary purpose of offering peer support. There is also a lack of consistent support, training and supervision.

 

The Solution

• Adequately fund programs that teach consumers to become Peer Specialists which then prepares them to become certified via the State Certified Peer Specialist Certification Process.

 

• Mandate the hire of paid Peer Specialists throughout the mental health delivery system and adjunct systems (including Department of Corrections, Division of Vocational Rehabilitation, and all HMO’s contracted by the Department of Health).

• Ensure that Peer Specialists are paid a living wage and benefits.

·         Create a Certified Peer Specialist Employment Clearinghouse that can hire, supervise and further train Certified Peer Specialists, provide training and technical assistance to those who wish to contract for their services and continue to strengthen and enhance the role of Certified Peer Specialist.

Develop employer standards to assure that Certified Peer Specialists are being utilized supervised, trained and supported appropriately by those who wish to employ them directly.

Related articles

• On to the grassroots (kenyatta2009.wordpress.com)
• SL County Gov says outreach program to help mental health patients, not police (fox13now.com)
• Time flies when you’re acting strange (kenyatta2009.wordpress.com)

On to the grassroots

Jim Doyle and Kelda Roys (Photo credit: Wikipedia)

This afternoon I received  confirmation from the Grassroots Empowerment project that my registration was approved for Empowerment Days. This event is an effort to contact policy makers in Madison from April 29-May 1. I  went to Empowerment Days several years ago but this one will be my first major advocacy effort since I became a certified peer specialist a few weeks ago.

As such it is an important step forward. The last time I went, Jim Doyle was Governor and there were democratic party majorities in both houses of the legislature. Now things are radically different, with Scott Walker as Governor facing a recall election along with five  republican state senators. The republicans have instituted many policy changes that I don’t like, which is why I signed the recall petition against Walker. However, simply shifting back to democratic control will not automatically solve all of the problems for people with mental illness.

We need to expand the funding available for consumer run services, which was an issue that Jim Doyle inherited and failed to correct . Similarly, the problem of inadequate Medicaid reimbursements for dentists and psychiatrists developed over several years and many administrations. In addition, since Grassroots Empowerment Project is a non-profit organization, there is a possibility some of the participants in Empowerment Days will be republicans. Otherwise, they could run the risk of losing their tax exempt status. This non-partisan effort seeks support from across the political spectrum.

I’m going to Empowerment Days to make a difference in the lives of the consumers where I work. I want to see change because people can’t wait. We are in a critical time where the misplaced priorities nationally and statewide are damaging thousands of vulnerable citizens. In the days ahead, I will be blogging my observations from Madison. Always remember that the journey of a thousand miles begins with first step.

 In the days ahead, I

Recall Walker (Photo credit: marctasman)

The Free Dictionary: To take part in something: participated in the festivities. →

Mind freedom wins victory over forced electroshock in New York State

Update 18 April 2012

VICTORY!

Forced Electroshock of Glen K. in a
New York Psychiatric Institution Halted!

Within 48 hours of the launch of a MindFreedom International Alert Campaign, the Attorney General for New York State announced today that Glen K. will receive no more forced electroshock under his court order. Rockland Psychiatric Center was giving involuntary electroshock over and against Glen’s expressed wishes.

Glen has been told. He is thrilled.

He won! Thank you to everyone who spoke out for Glen!

Glen’s attorneys got a call from the NY Attorney General earlier today. Under the guise that Glen is doing so well, the Attorney General said they are no longer defending the court order to give Glen electroshock, and are withdrawing that order.

Glen won’t be forcibly shocked any more under this order.

Given this Attorney General decision, Glen may be creating an advanced directive to help protect him in the future.

MindFreedom contacted Mental Hygiene Legal Services, which has defended Glen and a number of other New York psychiatric survivors against forced shock. We spoke with Glen’s attorneys Dennis Feld and Arthur Bear, who made this public statement:

“We feel that our client has been vindicated, and what we thought was one of the most onerous for forced treatments we ever saw has now been nullified.”

And there’s no need to go to Brooklyn for Glen’s hearing tomorrow, 19 April 2012, because Glen won!

MFI director David Oaks said, “Thank you everyone for your quick response on this campaign. Keep contacting Governor Cuomo and ask him to issue a moratorium on all involuntary electroshock in New York State!”

BELOW are other updates from the last two days, including how to hear a brief recording of an interview with Glen conducted yesterday by MFI.

For live links and the original alert go to:
http://bit.ly/cuomo-forced-ect

~~~~~~~~~~

Updates from yesterday, 17 April 2012:

** You can now hear a nine-minute MP3 audio excerpt of a phone interview conducted today with Glen K., by MFI. You may also read the text notes of the interview. [Find links at http://bit.ly/cuomo-forced-ect

]

** The first 24 hours of Glen’s campaign already had an impact. MFI received a call from John Allen, director of Consumer Affairs for NY State Office of Mental Health, who claimed: “While we can’t comment on this individual case, we have suspended and are reviewing policy and procedure that would lead to these kinds of circumstances in the future.” While this is positive news, MFI will wait until Glen or his representative declare victory.

~~~~~~~~~~~

Update 16 April 2012:

Glen K. has reasonable objections to on his forced electroshock, and states:

“ECT causes profound memory loss, it causes universal brain damage , and it is a harsh, harsh treatment…”

~~~~~~~~~~~

BELOW is Excerpt from Original MindFreedom Alert that Apparently Helped Glen Win His Campaign to Say “No!” to Forced Electroshock

Thank you everyone! Congratulations Glen!

“No one is tired on victory day.” – ancient Persian expression

~~~~~~~~~~~

MFI News Exclusive

April 16, 2012

Your Tax Dollars At Work:

Does Governor Cuomo Know His NY State Institution is Forcibly Electroshocking Glen K.?

by MindFreedom International

It’s in the public record:

Glen K. is being forcibly subjected twice a week to electroconsulvive therapy (ECT), also known as shock treatment, in a New York state mental health institution – Rockland Psychiatric Centerphoto on right – where he is being held involuntarily. These shocks are administered to Glen K. over his clear and consistent protest, under the authority of a court order which authorizes a series of 120 shock treatments over a period of 12 months.

This order also authorizes the hospital to chemically restrain Glen K. with involuntary psychiatric drugs, when he refuses medical procedures in preparation for ECT. On many occasions, the hospital has also employed physical and chemical restraints to overcome his resistance to ECT.

FOR REST OF ORIGINAL ALERT, AND LIVE LINKS IN UPDATES, GO TO:

http://bit.ly/cuomo-forced-ect

 

Related articles

• New York patient under court order for 120 shock treatments over 12 months (examiner.com)
• The Illegality of Forced Drugging and Electroshock (bulletfame.wordpress.com)
• Electroshock Therapy and Its Applications (socyberty.com)