Support for mood disorders: Allen Doederlien shares information Thursday

By Linda Braden Albert | [email protected] | July 20, 2014

A series of presentations focusing on mental health issues that began in March at the Blount County Public Library will continue Thursday as Allen Doederlein, president of the Depression and Bipolar Support Alliance (DBSA), speaks on bipolar disorder and depression. The presentations, sponsored by NAMI (National Alliance on Mental Illness) Maryville, are free and open to the public.

Doederlein said, “Our headquarters are in Chicago, Ill., and yet, we are really all over the country and have some incredible and important affiliates in Tennessee. The work they do is entirely volunteer. It’s done as a labor of love and it’s done from a very personal place.”

The organization is by and for people who live with depression or bipolar disorder. “That lived experience informs everything we do,” Doederlein said. “We provide information that’s easy and understandable, not written in ‘medicalese,’ not confusing but gets directly to what these conditions are and what you can do to live and get well. We provide empowerment. These are conditions that can make people feel disenfranchised, that can carry great stigma. We want to make sure that people are strong advocates for themselves.”


Peer support

Doederlein said another goal is to raise concerns and needs to elected officials but also on a more personal level. “Also in their work places and their families — anyplace people with mood disorders may find themselves, to say, let’s work collaboratively and constructively to make sure everyone does well,” he said.

DBSA support groups provide valuable assistance and education for those with mood disorders. Doederlein said, “Our chapters operate free, in-person peer support groups. That’s a group that meets without a doctor or clinical professional present, just the people with a lived experience. There’s a great deal of scientific literature that shows that peer-to-peer experience is greatly beneficial and helps people get well and stay well.”

About 53,000 people are reached nationally in a year by these peer support groups, he added.

Doederlein said Larry Drain, president of the NAMI (National Alliance on Mental Illness) Maryville and initiator of the mental health informational series, is a wonderful example of someone with a great deal of power and intellect who has been challenged by mood disorders.

“He had taken that lived experience and made something in terms of giving back to others,” Doederlein said. “When you think that there are people doing that all over the country, it’s really, really something. Larry’s not only done that in terms of support but also as an advocate.”


Inspiration

At the national level, 50 percent of the paid professional staff and volunteers must, by charter, have personal experience in dealing with mood disorders.

“That perspective informs everything that we do,” Doederlein said. “That’s really important. Very often in health-related education or advocacy, it will be doctors talking to doctors, not really related to a person getting herself or himself well. We make sure that’s at the center of what we do.”

Mood disorders include a spectrum of conditions, including depression and bipolar disorder. Doederlein said, “About 21 million American adults are estimated to be affected by depression and bipolar disorder. That breaks down to about 14 million affected by depression, and between 6 and 7 million affected by bipolar disorder.”

Mood disorders are challenging, but they can be managed and those with the disorders can thrive and contribute to society, Doederlein said. A prime example — Abraham Lincoln.

To learn more, visit the DBSA at www.DBSAlliance.org or attend Thursday’s presentation. It begins at 6:30 p.m. at the Blount County Public Library.

Will you speak???

by hopeworkscommunity

The opposition to Medicaid expansion is loud, organized, powerful, aggresssive and persistent.  Many people believe that the fight is over with in Tennessee. They point to the opposition in the legislature and wonder how they can make a difference. Expansion seems like such a no brainer in so many ways. I cant remember when the state of Tennessee had a chance to do something with the ability to help so many people so much. Yet it seems so far away.

It will take people who believe in it speaking up, speaking a lot, and speaking a lot more. Silence will only confirm what is. If what you say matters, saying nothing matters even more. Will you speak up??

There is no assurance it will make a difference. There is no promise you will be heard. The only promise is what will happen if you dont.

We need each other. Badly. Speak out. Write. Call. Email. Do something and then support someone else in doing the same. Vote each and every day the matters of your heart.

If are voice is to matter then what we do must matter.

Speak today for Medicaid expansion. Speak tomorrow and the day afterward. And continue speaking until you are heard and make a difference. If you dont speak for the people in need now who will speak for you in need.

Tomorrow will be my 13th letter to Governor Haslam. The day after that will be the 14th. Please join me. Contact Governor Haslam today.

hopeworkscommunity | May 29, 2014

    TMHCA is, once again, excited to announce an upcoming FREE WRAP® “refresher” course in Nashville, Tn. This training is funded by TDMHSAS.

Training Dates: 6/23/14, 6/24/14, & 6/25/14

Location: TAADAS Conference Room

                1321 Murfreesboro Pike

                Nashville, Tn.; Office

COURSE DESCRIPTION: The WRAP Refresher Course is a three day, interactive course co-facilitated by TMHCA Advanced Level WRAP® Facilitators. The primary purpose of this Course is to sharpen & expand facilitation skills to further engage students in  Wellness Recovery Action Planning.

 

 

Through attendance in this course, WRAP® Facilitators will:

1.      Recognize expanded options on how to give group introductions.

2.      Identify additional knowledge areas, Values & Ethics of WRAP®

3.      Apply new skills to sharpen & expand  group facilitation skills.

4.      Develop new, creative approaches to Facilitation to accommodate participant challenges & different group needs.

 

The Copeland Center strongly recommends that WRAP® Facilitators attend a Refresher Course @ least every two years to stay up on new developments and best practices.

 

For further information or to proceed with registration, please call or email Dan Hamer, ALWF @ ,or

May 2014: Kathy Flaherty

Kathy Flaherty works as a senior staff attorney at Statewide Legal Services of CT, Inc.  She has dedicated her professional life to advocating for the rights of the underserved.  A graduate of Kingswood-Oxford School, Wellesley College and Harvard Law School, Kathy has 17 years of experience in poverty law, specifically focusing on housing, benefits, and consumer law. 

Kathy lives with bipolar disorder.  She makes full use of her work place’s very generous sick leave benefits and a flexible schedule.  Kathy was diagnosed her first year of law school after being civilly committed.  She was not permitted to return to Harvard until the next fall, at which point the school put conditions on her return. 

During her third year of law school, she used the Harvard Law School newspaper as the forum to come out about her illness.  Against the advice of the Office of Public Interest Advising, when applying for jobs after law school, she included her position on the council of former patients of McLean Hospital, making her disability fairly obvious.  “If someone didn’t want to hire me because of my disability, I didn’t want that job.” Kathy says that she has gotten jobs because she has disclosed.

Kathy shares that her biggest barrier to the legal profession was getting admitted to the Connecticut Bar.  Despite the fact that she had already been admitted to the Massachusetts and New York Bars, she had to wait for a year and a half and then was conditionally admitted. For the next nine years, she had to report that she was taking her medication, as well as provide a doctor’s note twice a year confirming that she was in fact taking her medication. 

Since 1999, Kathy has served as a volunteer trainer, presenter, and facilitator for Connecticut’s chapter of the National Alliance on Mental Illness (NAMI-CT).  Combining her personal experience as a recipient of mental health services and her legal background, she is able to speak to issues affecting those living with mental illness from a multi-faceted perspective.  Her advocacy work has earned her numerous honors including the Dr. Karen Kangas Advocacy Award from Advocacy Unlimited in 2010.   “Winning an award named for someone who is a role model for advocacy and a very dear friend is humbling.”

Kathy currently serves as a member of the Board of Directors of Advocacy Unlimited, Lawyers Concerned for Lawyers-CT, and the Connecticut Alliance to Benefit Law Enforcement (CABLE). She also serves on Governor Malloy’s Sandy Hook Advisory Commission.  Her goal for the future?  “To continue to do work I enjoy.”

Target Zero to Thrive This April

DBSA targets raising expectations for mental health treatment.

A month-long social media campaign, Target Zero to Thrive, challenges mental health care professionals, researchers, and individuals living with or affected by mood disorders to raise treatment goals to complete remission—to zero symptoms.

Of course the first priority for treatment is ensuring a person living with depression or bipolar disorder is out of crisis. However, too often the end goal established for successful long‐term care is for the person to maintain a stable mood. Better, or even stable, is not always well. Every person deserves the opportunity to not just survive but thrive, and to do that we need to ensure true wellness is the end‐goal for mental health treatment.

Consider this, successful treatment for cancer proceeds with the goal of removing every cancerous cell—to achieve complete remission. Why then, do we consider treatment for depression or bipolar disorder to be successful when symptoms persist, even if the person is considered to be stable?

The cost of settling for reduced symptoms is simply too great. It is, in fact, a matter of life and death—for when symptoms persist, individuals who have mood disorders are:

• at significantly greater risk of relapse(1)
• more likely to experience significant functional impairment, making the day‐to‐day demands of job and family challenging, and too often, debilitating. (2)
• more likely to have life‐threatening co‐occurring conditions, such as heart disease, hypertension, and diabetes—a huge factor in why individuals with mental health conditions die, on average, 25 years younger than those without mental health conditions (3)
• at a higher risk to die by suicide (4)

DBSA President Allen Doederlein shares, “Living with a mood disorder can damage hope and lower expectations; so a person may not expect or think they deserve a full life. We, as peers, clinicians, researchers, and family, need to help them expect and achieve more—by raising the bar for treatment. Targeting zero symptoms may seem like a formidable goal, but there are over 21 million reasons and Americans living with depression or bipolar disorder to make it a goal worth pursuing!”

(1) Am J Psychiatry. 2000 Sep;157(9):1501-4.
Does incomplete recovery from first lifetime major depressive episode herald a chronic course of illness?
Judd LL1, Paulus MJ, Schettler PJ, Akiskal HS, Endicott J, Leon AC, Maser JD, Mueller T, Solomon DA, Keller MB.

(2) J Clin Psychiatry. 2007 Aug;68(8):1237-45.
Mood symptoms, functional impairment, and disability in people with bipolar disorder: specific effects of mania and depression.
Simon GE1, Bauer MS, Ludman EJ, Operskalski BH, Unützer J.

(3) Bipolar Disord. 2004 Oct;6(5):368-73.
Burden of general medical conditions among individuals with bipolar disorder.
Kilbourne AM1, Cornelius JR, Han X, Pincus HA, Shad M, Salloum I, Conigliaro J, Haas GL.

(4) Psychiatr Serv. 2013 Dec 1;64(12):1195-202. doi: 10.1176/appi.ps.201200587.
Does response on the PHQ-9 Depression Questionnaire predict subsequent suicide attempt or suicide death?
Simon GE, Rutter CM, Peterson D, Oliver M, Whiteside U, Operskalski B, Ludman EJ.

Larry Drain, Legislative Liaison for DBSA Tennessee, offers this blog with its many references that provides points for and against the Murphy bill. Please take time to self educate. Larry gives us a good start.

[Children's Mental Health Network

The Morning Zen]

Congressman Tim Murphy introduces controversial Helping Families in Mental Health Crisis Act of 2013

2 Comments | Posted December 15, 2013

On Friday, one day before the anniversary of the Newtown school shooting tragedy and on the same day of yet another tragic shooting at a school in Colorado, Congressman Tim Murphy introduced the Helping Families in Mental Health Crisis Act of 2013, a bill that would effectively rewrite how the Substance Abuse and Mental Health Services Administration (SAMHSA) operates and significantly narrow the focus of the types of mental health services and supports it helps promote through its grant programs. While the bill is at this point just a proposal, it is an important read for Network faithful as it sheds a light on the thinking of many individuals across the country about how to improve mental health services in America. Unfortunately, with the continued tragedies occurring at schools across the nation the tendency to equate guns and violence with mental illness leads to recommended solutions in this bill that are narrow in focus and could potentially set back the advances in the field of mental health 20 to 30 years.

What makes writing this Morning Zen piece difficult for me is that I have the utmost respect for Congressman Murphy. A child psychologist by training, co-author of two books ("The Angry Child: Regaining Control When Your Child Is Out of Control" and "Overcoming Passive-Aggression), it is obvious that Congressman Murphy cares deeply about improving mental health services. For that he is to be applauded. But what is in this proposed bill for the most part is either mystifying or antithetical to what the research tells us works best for young people with emotional challenges and their families. In fairness, at the end of this post I have included links to position statements on the proposed bill from national organizations and thought leaders both for and against the bill. As always, we pride ourselves on providing as many perspectives as possible so that our educated readers can make up their own minds and respond to their elected officials accordingly.

The response from mental health advocates and provider groups both for and against the bill was swift. As is the general approach of the Children's Mental Health Network we took the weekend to read and digest the 135-page bill before making our comments. The list is long so grab a cup of coffee for this one.

The proposed bill is complex in that mixed in with proposals that are administratively bureaucratic, relying on reference resources that in some cases are twenty years old and frankly dismissive of anything outside of the realm of narrowly defined evidence based practice, are some excellent proposals such as continuing funding for the Garrett Lee Smith and National Child Traumatic Stress initiatives.

However, overwhelmingly the recommended changes in the bill set the advances made in knowledge about what works for youth with mental health challenges and their families back a good twenty to thirty years.

Clouding the picture of how to interpret this proposed bill was the timing of its release – on the eve of the anniversary of the Newtown tragedy and on the day of yet another shooting at a school in Colorado, where emotions were already running high and the popular press was flooded with news stories about guns, violence and mental illness. Even though research shows that those with a mental illness are significantly more likely to be a victim of violence than a perpetrator of violence, discussions in Congress about what to do tend to fall too easily into the guns + violence = mental illness equation.

Note: Be sure to read Lisa Lambert's Morning Zen post for a parent’s reflection on the anniversary of the Newtown tragedy.

Okay, with all of this in mind as a backdrop for what is in the proposed bill, let’s take a walk through some of the highlights. The 135 page document is one I encourage you to read to get your own sense of its merits and drawbacks. In this post I will focus on some of the key areas that are important to highlight. Page numbers of the bill are cited so that you can read the full text in the copy of the proposed bill that you can download here.

Additional layers of bureaucracy added while diminishing the decision-making role of key SAMHSA personnel (Page 4)
The position of Assistant Secretary for Mental Health and Substance Use Disorders would be created. This individual would directly supervise the Administrator of the Substance Abuse and Mental Health Services Administration. Reading through the responsibilities that this individual would have left me perplexed, as the duties described appear to already be in place under the responsibility of the Administrator.

National Mental Health Policy Laboratory (page 7)
The proposed bill calls for the creation of a National Mental Health Policy Laboratory (NMHPL) headed by a Director. The purpose of this Director position would be to:

• (A) Identify and implement policy changes and other trends likely to have the most significant impact on mental health services and monitor their impact in accordance with the principles outlined in National Advisory Mental Health Council’s 2006 report entitled ‘The Road Ahead: Research Partnerships To Transform Services’;
• (B) Collect information from grantees under programs established or amended by the Helping Families in Mental Health Crisis Act of 2013 and under other mental health programs under this Act, including grantees that are federally qualified community behavioral health clinics certified under section 201 of the Helping Families in Mental Health Crisis Act of 2013 and States receiving funds under a block grant under part B of title XIX of this Act; and
• (C) Evaluate and disseminate to such grantees evidence-based practices and services delivery models using the best available science shown to reduce program expenditures while enhancing the quality of care furnished to individuals by other such grantees."

The description of the NMHPL goes on to say that "In selecting evidence-based practices and services delivery models for evaluation and dissemination under paragraph (2)(C), the Director of the NMHPL 

• (A) Shall give preference to models that improve the coordination, quality, and efficiency of health care services furnished to individuals with serious mental illness; and
• (B) May include clinical protocols and practices used in the Recovery After Initial Schizophrenia Episode (RAISE) project and the North American Prodrome Longitudinal Study (NAPLS) of the National Institute of Mental Health.

On page 10 the language continues with "In carrying out the duties under this section, the Director of the NMHPL shall consult with representatives of the National Institute of Mental Health on organization, hiring decisions, and operations, initially and on an ongoing basis; (B) other appropriate Federal agencies; and (C) clinical and analytical experts with expertise in medicine, psychiatric and clinical psychological care, and health care management.

The Children’s Mental Health Network is troubled that there is no mention of youth and family involvement in such a consulting pool, especially with the impressive track record achieved by SAMHSA in cultivating a family-driven, youth guided approach through its system of care grants and cooperative agreements over the past 20+ years.

Interagency Serious Mental Illness Coordinating Committee (page 14)
Yet another bureaucratic layer is added to the decision-making process with the recommendation to establish an Interagency Serious Mental Illness Coordinating Committee to "assist the Assistant Secretary in carrying out the Assistant Secretary's duties.

The responsibilities of this Committee include:

• (1) Develop and annually update a summary of advances in serious mental illness research related to causes, prevention, treatment, early screening, diagnosis or rule out, intervention, and access to services and supports for individuals with serious mental illness;
• (2) Monitor Federal activities with respect to serious mental illness;
• (3) Make recommendations to the Assistant Secretary regarding any appropriate changes to such activities, including recommendations to the Director of NIH with respect to the strategic plan developed under paragraph (5);
• (4) Make recommendations to the Assistant Secretary regarding public participation in decisions relating to serious mental illness;
• (5) Develop and annually update a strategic plan for the conduct of, and support for, serious mental illness research, including proposed budgetary requirements; and
• (6) Submit to the Congress such strategic plan and any updates to such plan.

There is a long list of required members for this committee (page 15), including the Director of NIH, the Attorney General of the United States; the Director of the Centers for Disease Control and Prevention and more. Members of the Committee serve 4-year terms and would be required to meet a minimum of two times per year. In addition, the Committee “may establish subcommittees and convene workshops and conferences "to enable the subcommittees to carry out their duties."

And finally, with regard to administrative duties, on page 70 it is noted that the administration of block grants would be removed from the Director of the Center for Mental Health Services and shifted to the Assistant Secretary for Mental Health and Substance Use Disorders. Gonna be one busy Assistant Secretary if this proposal goes through!

I can't help but think that if this plan were to come to fruition there would be bureaucratic gridlock. Two new significant leadership positions assuming key duties of currently existing high ranking officials within SAMHSA and a large Committee with sub-committees to "assist the Assistant Secretary in carrying out the Assistant Secretary's duties" (Page 14). In my mind, this is a huge duplication of duties already ascribed to the SAMHSA Administrator, the Director of the Center for Mental Health Services and others within SAMHSA.

Let's move away from administrative duties to some of the new grant programs proposed, specifically the Assisted Outpatient Treatment Program. The proposed bill calls for up to 50 grants each year for a 4-year pilot program to focus on assisted outpatient treatment programs (Page 19). Each grant would be eligible for one million dollars per year for four years - $15,000,000 per year would be authorized totaling $60,000,000 over the four-year period.

Assisted outpatient treatment is a controversial topic, with some saying it is the best option for an adult with a mental illness who "lacks capacity to fully understand or lacks judgment to make informed decisions regarding his or her need for treatment, care, or supervision." Others, including the Children's Mental Health Network, see this as a potentially dangerous road to travel in that it could have wide-ranging impact on those who might be swept up unnecessarily. You can review both sides of the argument regarding Assisted Outpatient Treatment at the end of this post.

Number of seriously mentally ill who are imprisoned (page 63)
Section 405 focuses on reports of the number of seriously mentally ill who are imprisoned. An important topic for sure, the intent is to "calculate the number and type of crimes committed by persons with serious mental illness each year, and detail strategies or ideas for preventing crimes by those individuals with serious mental illness from occurring… For purposes of this section, the Attorney General, in consultation with the Assistant Secretary of Mental Health and Substance Use Disorders shall determine an appropriate definition of ‘‘serious mental illness’’ based on theHealth Care Reform for Americans with Severe Mental Illnesses: Report’’ of the National Advisory Mental Health Council, American Journal of Psychiatry 1993; 150:1447–1465. The link is provided though you will need to pay the journal for the download. We can only hope that this document, written 20 years ago, reflects the evolution of thinking about mental health challenges since then. Of greater concern is the proposed process for decision-making about defining "serious mental illness." Should this just be left to the Assistant Secretary and the Attorney General? This is much too vague for our liking.

Reducing the stigma of serious mental illness (page 79)
It is hard to even comment on this section when the entire document is stigma-laden, focusing primarily on a narrow subset of those individuals with a diagnosis of serious mental illness when describing what needs to happen within a federal agency charged with looking at the full spectrum of behavioral health issues. However, Network faithful should read it and decide for themselves.

Title XI-SAMHSA Reauthorization and Reforms (page 99)
Mentioned earlier is the fact that the Assistant Secretary for Mental Health and Substance Use Disorders would be in charge of SAMHSA. One of the more fascinating recommendations is that "At least 30 days before awarding a grant, cooperative agreement, or contract, the Administrator shall give written notice of the award to the Committee on Energy and Commerce of the House of Representatives and the Committee on Health, Education, Labor, and Pensions of the Senate.’’ This suggests adding yet another layer of review, more opportunity for delay and added bureaucracy. Though not specified, one could assume that a member of either Committee could block a grant award.

In addition, it would be required that "Before awarding a grant, cooperative agreement, or contract, the Secretary shall provide a list of the members of the peer review group responsible for reviewing the award to the Committee on Energy and Commerce of the House of Representatives and the Committee on Health, Education, Labor, and Pensions of the Senate." This is yet another opportunity for delay and bureaucratic red tape.

Transfer of all functions and responsibilities of the Center for Behavioral Health Statistics and Quality to the National Mental Health Policy Laboratory (page 102)
This section discusses the transfer of "all functions and responsibilities of the Center for Behavioral Health Statistics and Quality to the National Mental Health Policy Laboratory. Why would one do this? In addition, in this section responsibilities currently assigned to the Administrator are reassigned to the Assistant Secretary. I am beginning to wonder what is left for the Administrator to do?

Establish a clearinghouse of evidence-based practices  (page 106)
In this section there is mention of the establishment of "a clearinghouse of evidence-based practices, which has first been reviewed and approved by a panel of psychiatrists and clinical psychologists, for mental health information to assure the widespread dissemination of such information to States, political subdivisions, educational agencies and institutions, treatment and prevention service providers, and the general public, including information concerning the practical application of research supported by the National Institute of Mental Health that is applicable to improving the delivery of services..."

Unfortunately there is no mention of consumers, families or youth involved in this review.

Limitations on Authority (page 133)
The section on Limitations on Authority includes some questionable items. For example, in this section it is stated that in order for SAMHSA to host or sponsor a conference they "must give at least 90 days of prior notification to the Committee on Energy and Commerce and Committee on Appropriations of the House of Representatives and the Committee on Health, Education, Labor, and Pensions and Committee on Appropriations of the Senate." Again, this seems like yet another unnecessary layer of bureaucracy.

No financial assistance to any program without evidence-based practices (page 133)
Continuing on page 133 is the directive that the Administrator of SAMHSA "shall not provide any financial assistance for any program relating to mental health or substance use diagnosis or treatment, unless such diagnosis and treatment relies on evidence-based practices."

If you have made it this far in this lengthy post you know that this leads back to the question "What is an evidence-based practice and who is involved in deciding that?" From reading the full text of the proposed bill the decision makers are definitely skewed toward the medical community with a strong focus on a narrow slice of the overall population of individuals needing mental health services.

Elimination of unauthorized SAMHSA programs without explicit statutory authorization (page 134)
Saving one of the more controversial items for last (at least as based on the tenor of emails sent to the Network over the weekend) is the section on the elimination of unauthorized SAMHSA programs without explicit statutory authorization. The language is clear that no new programs are to be created that are not explicitly authorized or required by statute and that "by the end of fiscal year 2014, any program or project of the Substance Abuse and Mental Health Services Administration that is not explicitly authorized or required by statute shall be terminated."

The proposed bill goes on to say "The Assistant Secretary for Mental Health and Substance Use Disorders shall seek to enter into an arrangement with the Institute of Medicine under which the Institute (or, if the Institute declines to enter into such arrangement, another appropriate entity) agrees to submit a report to the Congress not later than July 31, 2014, identifying each program, project, or activity to be terminated under subsection (a).

So, there you have it. Quite a bit to chew on and I cut this post down significantly. Please take the time to read the proposed bill. Whether it gains traction in the House or not it is important to remember that this proposed bill reflects the thinking of many. If you are concerned about this, as we are, then you might want to consider an education campaign.

Next week we will share our collaborative efforts with Maryland-based mental health providers, adult and youth representatives with experience receiving mental health services, and family advocates and other agency representatives to put together a site visit for Senate and House Appropriations Committee staff to not only show them what a coordinated system of care approach looks like in the effective provision of services and supports for young adults with mental health challenges, but also to provide them the opportunity for one on one dialogue with youth and adults who utilize mental health  services, families and the amazingly dedicated professionals who work side by side with them. We began organizing this effort for Senate Appropriations staff as a result of our inquiry into the Healthy Transitions Initiative in August of this year. Senate Appropriations Committee staff have agreed to come and we will be extending an invitation to House Appropriations Committee staff this week. I will give you full details in the Morning Zen post this coming Friday.

What is so important about our education campaign is that it is not focused on one grant or particular service. We are not bringing staffers to a visit to ask for money. We are bringing staffers to a visit to let them experience firsthand the importance of a comprehensive approach to meeting (in this case) the needs of young adults with mental health challenges. Sounds like a systems of care approach to me!

And finally, here is a sampling of different individual and organizational analyses and reactions to the proposed bill, both pro and con. Remember, an educated voice is a powerful voice.

For the proposed bill

• How Should We Help the Seriously Mentally Ill?
• NAMI NY State Position Statement  
• NAPHS Applauds Rep. Tim Murphy for Introduction of Comprehensive Mental Health Reform Legislation

Against the proposed bill

• National Coalition for Mental Health Recovery press release jointly issued with the National Disability Rights Network and the Bazelon Center for Mental Health Law
• Involuntary Outpatient Commitment (IOC)1 Myths and Facts
• Mental Health America statement

Time to do your homework folks!

Scott Bryant-Comstock
President & CEO
Children’s Mental Health Network

On my mind: Fighting stigma, building communitiy

By Bob Carolla

BP magazine

When I am speaking to groups, I often introduce myself by saying I have bipolar disorder and am a lawyer and that the latter carries the greater stigma. It’s a sure-fire laugh line. There’s also a grain of truth in it.

Fifty years ago, stigma surrounded bipolar disorder, which was considered “manic depressive insanity.” Sadly, today, it still touches mental illness, as well as HIV/AIDs, race, ethnicity and socioeconomic status. It’s important to remember we are not alone. We are part of a broader movement focused on changing popular culture.

The good news is that the way the public views bipolar disorder is changing, and for the better. We can see progress, when bipolar themes are woven into television shows like House and Broadway musicals like Next to Normal offering a good dose of humor. Next to Normal is controversial (its messages don’t necessarily frame bipolar as a medical illness or encourage treatment), but at least it has people talking about bipolar—and laughing, but not at our expense.

Today, the Internet is a leading source of health information (and misinformation) and has “democratized” mental illness. “Direct to consumer” (DTC) advertisements of medications on television and in print also have had an impact, informing people about an illness, symptoms and the potential side effects of drugs. Because of commercial marketing, some critics argue that bipolar is being over-diagnosed and is merely a “diagnosis du jour.” Frankly, I hate that term. It trivializes a life-threatening illness and represents one kind of stigma. Is there a cancer du jour?

Today, bipolar may come up in conversations at neighborhood barbecues as parents discuss their teenagers’ travails. High school students may think the diagnosis is no big deal, so long as it’s treated and symptoms don’t become “too bizarre.”

At my 25th college reunion, several classmates and I inevitably asked each other: “Who do you work for?” Few people know what NAMI stands for, so I usually have to answer using all eleven syllables of the National Alliance on Mental Illness, not ever knowing for sure how people will react to the “mental illness” part. It gets even more awkward if they ask, “How did you end up doing that?” Sometimes I cop out and answer that there’s a history of depression in my family.

At my reunion, I was more forthcoming. I simply stated, “I have bipolar disorder.”

“My brother does too,” one classmate chimed in.

“Hey, shake,” said another, extending his hand. “So do I.”

“Me too,” admitted a third.

Disclosure is liberating. By no longer internalizing stigma wrapped in a sense of shame, we gain self-confidence that can hasten recovery.

However, it’s still a hard, cold world out there. We have to be realistic and selective, particularly when it comes to employment.

For some reason, people in early stages of recovery who have been unemployed for a while often have a strong desire to disclose to prospective employers; their disclosure is probably an assertion of integrity in order to overcome stigma. “Keeping a secret” somehow feels “sneaky.” We want to purge feelings of shame and receive validation. Frankly, we should all get medals, but my advice is this: don’t look for them in job interviews. The workplace is also not the place to go for talk therapy. It’s not a good idea to reveal a history of bipolar to co-workers during lunch break. For reintegration, my advice to peers is to focus on establishing a record of valued performance during the first six to 12 months in a new job. Ask for accommodations only if needed.

Expansion of peer support is important because openness does empower recovery. In that regard, bp Magazine is an important vehicle for our movement. The magazine strengthens our community.

Staying connected, raising public awareness, and watching out for each other are all part of the fight against stigma. We’ve made progress, but let’s see where we are five years from now.

-----
Bob Carolla is director of media relations for the National Alliance on Mental Illness (NAMI) and oversees its StigmaBusters program. He is a member of bp’ s editorial panel.

The power of two


Your partner can become a pillar of strength when you work together as a couple
By Barbara Boughton, BP Spring 2013



There’s no doubt that the nature of your relationship with a “significant other” has a major effect on managing bipolar. Research now shows that having a supportive partner may be just as important as medication and psychotherapy in preventing relapse, according to Sagar Parikh, MD, a professor of psychiatry at the University of Toronto.

Likewise, the stress of high-conflict relationships or the emotions that accompany breakup and divorce can sometimes exacerbate symptoms of the disorder, Parikh says.

So what can you do to make your partner an ally in recovery?

The first step, says Parikh, is education—for both of you.

The more that both partners know about symptoms, treatments, and coping strategies, the more they can work together to address common challenges. Reading and online research, workshops presented by mental health organizations, discussions with mental health practitioners, and peer support groups are all good ways to get informed.

A partner or spouse who is up to speed on what it takes to live with bipolar will find it easier to understand when you ask for support.

The next step is learning to discuss matters relating to your illness openly and honestly.

For one thing, being able to share what’s going on in your life and your head provides your partner with a context for any irritability, sadness or high spirits you exhibit. For another, it gives you both a touchstone for recognizing early signs of a mood shift.

Elizabeth and her husband, Rory, who have been married since August 2012, have a conversation at least once a week about any symptoms Elizabeth might be experiencing.

“Regular communication is really important,” says Elizabeth, 32, of British Columbia. “We talk about what I’m feeling and things that he notices about me. Sometimes, it’s hard for me to see the forest for the trees, especially if I’m not feeling well.”

Rory’s feedback provides her with a reality check, Elizabeth says.

“Last year I had a manic episode and Rory realized something was wrong when I told him: ‘I want to go on a 5K run.’ I’m a pretty sedentary person, so for me that’s out of character. It gave Rory a clue that I might be experiencing mania,” she recalls.

In most intimate relationships, it’s important to make significant others aware of red flags, according to David Miklowitz, PhD, a professor of psychiatry and director of the Child and Adolescent Mood Disorders Program at the Semel Institute for Neuroscience and Human Behavior at the University of California–Los Angeles.

“People with bipolar disorder can make a list of symptoms and behaviors that they know indicate early signs of a manic or depressive episode. The partners can then refer back to these lists in order to spot early symptoms,” Miklowitz says.

comfort levelWith education and experience, partners often become adept at spotting subtle signs, Miklowitz notes—sometimes before the person with bipolar does. 

“Then the question becomes: If your partner spots early signs of mania or depression, what do you want them to do with that information?” Miklowitz says. 

“Do you want them to call your doctor? Do you want them to go in with you for a therapy session, or encourage you to take your medicines? Some people like that kind of active support from their partners, and some do not.”

In some cases, Miklowitz says, intervention from a spouse can be seen as “too parental or too controlling.”

The bottom line is this: In order to tell your partner how to be helpful, you first need to know what kind of help you want. That’s highly individual, so every couple will find a different fit. After a disturbing interaction with a friend or boss, one person may simply want to vent while another seeks advice on how to resolve the situation.

Bill, 67, has never looked for a lot of hands-on involvement from his wife, Telle. The couple lives in California, and has been married for 20 years. 
 
“The main way that Telle has supported me is through her acceptance of me—and that’s been very important to me and our relationship. She knows that I can stand on my own two feet, and she doesn’t judge me,” says Bill, a retired refrigeration pipe fitter.

What Bill appreciates are Telle’s understanding and compassion for his symptoms, her trust that he is working to get the best treatment he can, and her emotional support when he’s had to be hospitalized.

Still, Telle has occasionally taken an active role in Bill’s care. In May 2012, Bill became delusional while being assessed at a hospital for a blood clot in his lung. Telle spoke to his psychiatrist, who arranged for Bill to be admitted for psychiatric intervention. 

If your partner does take an active role, Miklowitz says, it’s important to understand that the person will probably make mistakes.

“It’s crucial to give your partner some leeway, especially in the beginning of a relationship, when they’re just getting to know you and the effects of your illness. They’re not trying to control you. They’re just trying to help, and they don’t always know how to best do that,” he says.

talking pointsOnce you are clear in your own mind about what role you’d like your partner to take, Miklowitz notes, it’s crucial to be direct in expressing your wishes—and also to listen to what your partner has to say.

Miklowitz recommends asking “clarifying questions” to make sure you understand your partner’s point of view. To doublecheck that you’re interpreting correctly, practice repeating back what the other person said—a technique known as reflective listening or mirroring.

Nancy Poirier, MPs, a clinical psychologist at the Douglas University Institute for Mental Health in Montreal, stresses the need to express your wants and feelings with compassion.

With mirroring, for example, first reflect your partner’s viewpoint, then express understanding and empathy to validate how the other person feels.

In addition, she says, “both partners should be careful to use ‘I statements’ rather than blaming the other person in talking about the bipolar disorder. The important thing is for both partners to feel understood.”

As far as practical approaches, Poirier recommends developing a relapse prevention plan that details early warning signs of a mood shift and how to respond. The Elizabeth and Rory’s plan includes a list of people whom Rory should call to get Elizabeth treatment and/or medication, as well as the name and contact information for the hospital where she’d like to be treated.

As a further step, Poirier notes, you and your partner can write a contract about what each of you will do when warning signs appear. A document you signed when well may be more effective against denial when you’re ill than a partner’s reminders.

There are other small but helpful ways partners can counter symptoms, she says. During a manic phase, reduce stimulation by decreasing light and loud music in the household, and keep credit and cash cards inaccessible. During a depressive phase, let more light into the house, encourage exercise, and gently urge completion of at least one pleasant activity each day.

On a day-to-day basis, agree on a system that keeps encouragement from feeling like nagging. Again, this will vary from couple to couple. Some might be comfortable with a daily check-in about medication compliance, for example, while others will prefer a more emotionally neutral chart system that both partners can refer to.

Couple’s therapy can be an effective way to develop strategies for coping with the disorder together, Miklowitz says.

“The counseling should help the couple solve problems that arise around the symptoms of bipolar disorder, and learn to communicate effectively about them,” he says.

In addressing specific issues, Miklowitz adds, it helps to realize that you may not get everything you want.

“You have to be willing to compromise,” he says. “You have to start with the assumption that everyone—you and your partner—are doing their best.”

“Doing your best” might involve taking as much responsibility as you can for your recovery and well-being, Poirier points out. For your partner, that might mean cutting you a little slack for symptomatic behavior.

Elizabeth says that when she succumbs to what she calls her “ooh, shiny!” syndrome, Rory usually accepts the impulsive action as part of her illness.

When she bought several hundred dollars’ worth of tea towels, she recalls, Rory commented that they were now stocked up for a few years. When she took their cat to the vet and came home with an extra kitten, Rory “accepted the kitten with open arms,” she reports—and they now have a rule that they only go to the vet’s together.

“He isn’t a pushover,” she says, “he just knows that in the spring, I pull a few whoppers and that is OK.”

In fact, she says, Rory took the news of her diagnosis better than she did. They were dating at the time, Elizabeth says, and Rory made it a point to find books that would be helpful.

“He never judged me for having bipolar,” she adds. “I’m very lucky to have found Rory.” 

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Barbara Boughton, a freelance health and medical writer, writes for Reader’s Digest, Medscape.com and other outlets. She lives in the San Francisco Bay area. 



Learning when a hug can helpWhen Heather and Ken first met in fall 2002, Heather certainly wasn’t in the mood for romance. She was experiencing serious depression and “very resistant to dating,” but Ken waited patiently.

“When we did start dating, I was very forthright about having bipolar disorder, and he was very understanding,” recalls Heather, 44.

Now Heather’s relationship with her husband is a rock that steadies her when symptoms crop up. In Heather’s case, that’s often behaviors that signal depression—not getting out of bed, failing to eat healthy foods, and crying a lot.

After nine years of marriage, Ken has come to understand what his wife needs when she is ill. And Heather made it a priority to communicate to her husband about what kind of support she finds the most helpful.

“Sometimes it’s just the simple things that are important,” Heather says. “A hug from Ken can be very grounding when I’m having a difficult time. He also knows when to give me space, such as when I get irritable, angry, and when I lash out.”

Perhaps more importantly, Ken and Heather have an agreement that they’ll promptly address any worrisome symptoms.

Heather admits she’s not always receptive when Ken spots signs of depression or hypomania, such as being quick to anger or spending too much on online shopping, yet she will usually agree to call her doctor.

“Couples therapy has also helped us,” she says. “We’ve learned not to blame each other when we discuss sensitive issues such as my bipolar disorder, and to respectively express our feelings. Sometimes that may mean taking a break or even going to different rooms when a discussion becomes too heated.”

She adds, “What has been most important is for both of us to realize that I’m more than the identified patient in our relationship. I’m Heather, a wife who is more than her illness, and who needs and wants hope and love from her partner.”



In sickness and in healthDan and Dolores have weathered 43 years of marriage—and Dan’s bipolar swings. 

Dan, now 73, was accurately diagnosed in his late 20s. He and Dolores were contemplating marriage, and she accepted the news along with the man.

“He was a real charmer and had a wonderful sense of humor,” Dolores remembers.

Dan was in a stable period when they met, but shortly after the wedding he slipped into depression. For the next decade, he cycled from months of mania marked by reckless spending and anger, to months of immobilizing depression, to stretches of stability that might last half a year. He went through a series of jobs, never keeping one for long.

“I was ill and non-productive and she was the provider and caretaker,” Dan says.

Dolores held down several part-time jobs, taking their two children to work with her because they couldn’t afford child care. The couple went through two bankruptcies.

“It was painful and it was devastating, but I didn’t leave because I don’t believe in divorce,” says Dolores, 75. “But even in the most difficult moments, Dan’s sense of humor would come shining through.”

They held on until Dan found the treatment he needed at Washington University. An equally important turning point was their decision to start a peer support group in 1980, which became one of the founding chapters of what is now the national Depression and Bipolar Support Alliance (DBSA).

The work not only helped his wife become more educated about the disorder, Dan says, but through running meetings “she gained many skills in talking with me in a very helpful and therapeutic way.”

“We learned how to communicate even around tough topics—and not blame the other person,” Dolores adds.

Dolores admits to “mixed feelings” about their marriage over the years, but says that their life improved as their ability to address Dan’s health got better.

“He has changed in a really positive way over the years,” she says. “And our communication strategies just got better and better. We feel so blessed now.” 


Another definition of partnerPeople who are single may find a family member who becomes a partner in recovery. For Jackie that’s her dad, Larry.

“We’ve become an amazing team at managing my bipolar I,” explains the 25-year-old. “We even have a special binder that we keep on the coffee table that has copies of the most important papers about my illness and how we should handle things.”

The binder includes a list of her medications and what they’re for, contact information for her doctors, steps to take in various crisis situations, even copies of some of her homework from psychotherapy.

Jackie has found the skills she’s learning in dialectical behavior therapy especially helpful in managing her symptoms. When she comes home from group, she shares new information with her father. Also really helpful, she says, is “both of us reading everything we can get our hands on about bipolar. We test out new techniques for managing things to see what works best for us.”

For example, Jackie now keeps track of when (or whether) she’s taken her medications on a dry-erase board that hangs on the fridge. The chart not only reminds her to take the meds, but also keeps her father in the loop without having to bug her.

Jackie, who was diagnosed at 14, has seen a huge change since her father started educating himself. When she’s in a mood shift, they’re able to talk through what may have triggered it and how to get her back in balance. When her dad learned that people with mental illnesses sometimes use cigarettes to cope with stress, he stopped insisting she quit smoking. Instead, he encourages her to cut back.

“Before he started reading he didn’t understand nearly as well as he does now, which really goes without saying,” she reflects. “We fought a lot more and he really didn’t ‘get’ me. Now we fight less and he’s much more compassionate to what I’m enduring.”

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It is unacceptable that people who are suffering from and struggling with mental health issues in their life be at risk of injury, trauma, assault or even death in their interactions with police officers whose only training as "being a good police officer"  leads them to a course of action that produces tragedy.  There is ample evidence that CIT training (Crisis Intervention Training) makes a difference. The "Memphis Model" has made an impact in many communities both large and small. Tragedies may continue to happen, but to expect and accept them as the cost of doing business as normal is simply and deeply wrong.

A few days ago I talked with a man whose 39-year-old "mentally ill" son had been attacked, beaten up and tasered by police in this community who "were doing their job."  Over the last few days I have spent a lot of time thinking about other incidents I either have direct knowledge of  or I have heard about.  And it has left me deeply troubled.

There are lots of people to blame and many people seem intent on solving the problem by trying to figure out who to blame.  I hear people talk about needing more psychiatric hospitals, more coercive treatment options etc.  I dont think there are really going to be an appreciable increase in psychiatric beds regardless of where you stand on the argument, rather you think it is a good idea or not.  Financially it simply not an option.  Arguments that vastly increasing AOT (assisted outpatient treatment) can solve the problem are not honest or realistic.

Someone will be the next Kelly Thomas.  Someone will be the next person a police officer faces on the street corner or in their home or in the jail.  It is happening right now.  It will be happening in a few minutes.  It will be happening tomorrow.  And what stops it from being someone you know, someone you care about, or even you.

It is pointless to bemoan the fact that police are being asked to do things they are not trained to do and then do absolutely nothing about providing them that training.  It is as unfair to the officer who is trying to do the best he can as it is to the person he is trying to deal with.

As far as I know the decision to implement CIT training is a local decision and depends very much on the financial resources of that community as well as the commitment to training that local officials may have.  Many communities, like the one I live in, have gotten officers involved in a piecemeal fashion but they are largely at the mercy of who offers the training and when.

Again, no one should be the victim of where they live.  I have been following in recent days the effort of New York state to deal with the same issue.  The proposal that is currently being fought over is whether or not to include in the state budget funds for what they are calling a "center of excellence for CIT training."  The idea, as I understand it, is for the state to establish a resource that could help communities access CIT training in a way they can afford and in a way that is most effective to them.  It shifts the burden of the argument from "is it practical?  Can we afford to do it?" to "Can we afford to not do it?"

It is too late for anything like that to happen in Tennessee this year, but is not to late to start the conversation.  Several other states already have chosen to establish something like "a center of excellence for CIT."  Some have found access to federal funding.  Others have found grants from other sources.

In the end, it not only saves lives but also saves money because of the injuries and traumas it prevents.

A couple of days I had a post which included a video of the beating of Kelly Thomas.  I made myself watch the video several days before the post and was horrified.  If you havent watched the video and still doubt the importance of what I am talking about watch the video yourself.  I have also seen videos of other beatings from virtually all over the country.  It is more than a Tennessee problem but it is a Tennessee problem.

In the days and weeks that follow I will be revisiting this conversation over and over.  I am by no means anywhere close to an expert.  If you think you know more than me on the subject there is a good chance you are correct.  My goal is to start a conversation, a widespread conversation, in Tennessee that prepares the ground to talk about this issue not as one that affects isolated localities but every person in this state.

It is a conversation I hope you will join.

Larry Drain, hope works community blog

I'm sharing the news of my being among national Award Winners for accomplishments over the past year. It has been a pleasure to serve as State Director and local chapter President. And I consider it an honor to be recognized by DBSA national.

I appreciate all the wonderful support I was given by my fellow officers, Board members, and the chapter membership throughout the year. You may view the announcement on the national web site athttp://www.dbsalliance.org/site/PageServer?pagename=peer_chapter_spotlights

                       Congratulations to our 2013 Chapter Service Award Winners!
The DBSA Chapter Service Awards recognize exemplary service by DBSA 
chapters, state organizations, and their leaders. Winners will be honored at the 2014 Chapter Leadership Forum in addition to receiving a cash award.

Steve Brannon of DBSA Jackson (TN) and DBSA Tennessee - Outstanding
Leadership
Steve is an excellent role model for pursuing a wellness-focused life while living with a mood disorder. He fights stigma by openly sharing his journey in the local newspaper, on DBSA’s website, and on his weekly online newsletter. He has worked with the local police department to help educate and train police officers for crisis response teams. Steve was selected for DBSA Peer Advocacy Training and was a representative of DBSA for Hill Day in Washington, D.C.
At his local chapter, DBSA Jackson (TN), Steve gently encourages, trusts, and believes in support group participants. He instituted a monthly “share your inspiration” night in which group members report on what keeps them going, creating an environment of hope and personal growth. Steve is dedicated to further advancing DBSA’s mission into surrounding communities and across the state. The number of support groups has doubled in the past year under his direction, encompassing all major cities and some smaller cities across the state. He has traveled hundreds of miles at his own expense to conduct local chapter visitations as state director. Steve’s passion for the advancement of DBSA’s mission in Jackson and the state of Tennessee is so strong that he has diligently dedicated his time and resources for over a decade.

DBSA Tennessee - State Organization Service 
DBSA Tennessee's amazing accomplishments made 2013 a rewarding year! 
They supported chapters in their state by hosting educational presentations and training programs, giving them the tools necessary for successful chapters. With help from DBSA Tennessee, five local chapters were interviewed on television or radio to promote DBSA to the community. Leaders encouraged one chapter’s community outreach, resulting in a city-wide Mental Health Day declared by their mayor. DBSA Tennessee’s robust plan to help new chapters in the startup process helped find free meeting locations, assistance in affiliation fees and paperwork, and provided a sponsor from an already established chapter to assist the new chapter.
Five members of DBSA Tennessee attended DBSA’s Peer Advocate Training in Washington, D.C. and then created an advocacy plan for their state including a campaign against proposed budget cuts to close all 45 of Tennessee’s Peer Support Service Centers. DBSA Tennessee is a growing, thriving organization. With its advocacy for peer support and local chapter start-up, community outreach and commitment to peer education, DBSA Tennessee is one of the most energetic affiliates of DBSA.

DBSA Murfreesboro (TN) - Rookie Chapter Service
DBSA Murfreesboro began in July of 2013 with support from DBSA Tennessee. 
The chapter started out with one support group, which saw its attendance 
double in fewer than six months, becoming one of the fastest growing local 
chapters in the state. The growth of the chapter can be attributed to the forces behind it that work tirelessly to get the word out about the group. Flyers and pamphlets are distributed to agencies and health care providers, the Salvation Army, local hospitals and businesses, and more. DBSA Murfreesboro provides post-hospitalization support for those who would otherwise have none. Educational materials, resources, and wellness tools are provided to each chapter participant. They have also started a family and friends support group.

Members of DBSA Murfreesboro participated in the state chapter meetings and backing of their U.S. Representative. For a chapter that achieved all of this in six months, DBSA Murfreesboro has a fine resume of accomplishments, but they consider their greatest success to be the level of support offered to each person who walks through their doors.

http://www.dbsalliance.org/site/PageServer?pagename=peer_chapter_spotlights