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.

If the mental health system was sane…

By Hopeworkscommunity

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

Those services would be availible to those that need them.

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

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

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

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

The goal would be to empower, educate, and support people towards gaining control over their lives so as to maximize their chances of leading happy, meaningful and successful lives.

This would not be empty words, but a passionate conviction that fuels and structures everything done in the system.

It would not mistake the people it serves for the labels it places upon them.

It would know that the most important thing about help is that it is what you do with people and not what you do to them. It would see itself as partnering with the people it serves.

It would know that people can say no and that not be a symptom of illness or distress.

It would view peoples values, hopes, thoughts, and aspirations as a source of strength and not a symptom of illness.

It would take substance abuse ultimately seriously. Drinking and drugging are the two primary ways people with mental health issues try to treat themselves.

It would make sure that one of the core experiences that someone seeking help has is contact and interactions with others who have dealt with similiar issues. It would treat seriously the idea that you can learn from the experience of others and them from you.

It would not tell people who have hard times or more problems they have failed or are failures.

It would take the issue of trauma seriously. Knowing how people have been hurt and not being part of hurting them further should be cornerstones of the system.

It would treat the issue of what happens in jails and prisons to people with mental health issues as a moral outrage and the impulse to do something about it as a moral necessity.

It would be honest about the risks and benefits of psychotropic medication. Help people to make real and informed choices.

It would treat families as important and not as irrelevant or a threat to what it is doing.

It would treat justice as a driving force and value in everything it does.

It would be honest with the people it serves about what it doesnt know if it wants them to have trust in what it does know.

It would attack the issue of suicide with passion. No one should ever feel like death is the best solution to life.

It would tell people that no problems make you less human,

It would view hope as realistic and know that when they dont they do more harm than good.

Larry Drain

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.

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

Medicare Rule Changes May Restrict Drug Choices for Seniors
http://guardianlv.com/2014/02/medicare-rule-changes-may-restrict-drug-choices-for-seniors/
(from Easy Browser)

The CMS decisions about which drugs to protect were supposed to be based on whether the drugs were needed to prevent increased doctor visits, hospitalizations, persistent disability, incapacitation or death that would otherwise occur within seven days if the drugs were not given. The choices about which drugs to remove from protection fail that test because, with acute mental illness, seven days without medication could easily lead to hospitalization, incapacitation or death. The same constraint exists for some 500,000 transplant patients. Seven days without the right medication could result in transplant rejection.

The quote above is from the article linked.  My jaw dropped when I read it.  CMS is proposing to drop certain drug classes from the status of protected medication.  The idea is to save money.  The article says it may save around 10% I believe.

My jaw dropped when I read the criteria.  It basically says that if doing without a drug for 7 days wont kill you, incapacitate, or put you in the hospital you really didnt need it to the point where your access to the medication is guaranteed to begin with.

WHAT ABOUT THE EIGHTH DAY??

Is it just me or does this not sound simply stupid, simply arbitrary and simply mean?  How in the world do you decide as a matter of cost containment that if someone doesnt die fast enough that dont really need a medication?  Who should have that kind of power??  Should anyone??

I read all the stuff about percents...percents of cost...percents of savings.  There is another "p" word-- PEOPLE.  Somehow it seems like it got lost.

Larry Drain at HOPEWORKSCOMMUNITY

ACA Enrollment Ending Soon -

 

Hi folks, we just want to remind everyone that the enrollment period for Patient Protection and Affordable Care Act is drawing to a close for this season. The last day to enroll will be March 31st. To be covered by April 1st, the last day to enroll is even earlier - March 15. Enrollment will start up again November 15th and go through January 15th.

  

Below are links to Tennessee events and resources you might contact for enrollment assistance. Please forward this email to anyone and everyone you know who needs assistance or needs to hurry up and get covered already! 

 

• Get Covered Tennessee Event Calendar: Click Here
• Find Help on Healthcare.gov: Click Here

 

If you've already enrolled we'd love to hear from you. Click here to share your story and tell us about your enrollment experience.

 

 

Thanks everyone and best of health to you from all of us at THCC

By: Tennessee Health Care Campaign

 

 

Scott Walker Emails: Former Top Aide Wrote

'No One Cares About

Crazy People'

Chris GentilvisoThe Huffington Post02/22/14 11:31 AM ET

Wednesday's release of thousands of pages of emails from Scott Walker's tenure as Milwaukee County Executive show a former top aide wrote that "no one cares about crazy people."

Back in 2006, the Milwaukee Journal Sentinel reported on the death of Cindy Anczak. The 33-year-old woman died of starvation complications while being treated at the Milwaukee County Mental Health Complex for bipolar disorder.

According to the Center for Media and Democracy's PR Watch, Anczak's parents filed a legal complaint in October 2010, which was brought by Walker staffers to the attention of then-Deputy Chief of Staff Kelly Rindfleisch.

"Totally coincidental to the election," replied Walker campaign advisor RJ Johnson, about the timing of the filing.

"Corp council [the County's attorney] wants to offer 50-100k," emailed Rindfleisch.

"Ok - any time after Nov. 2nd would be the time to offer a settlement," replied Keith Gilkes, who headed Walker's campaign.

"Barrett is going to make this the center of his campaign," Rindfleisch wrote in another email.

"yep and he is still going to lose because that is his base," replied Joan Hansen, a County official.

"Yep," Rindfleisch wrote. "No one cares about crazy people."

The AP noted on Wednesday that Rindfleisch was convicted in 2012 of felony misconduct in office for doing campaign work for a GOP lieutenant governor candidate on government time. She was sentenced to six months in jail and three years of probation, and is appealing her conviction on the grounds that Fourth Amendment rights were violated.

"Most of those would be four or more years old and they've gone through a legal process ... a multi-year extensive legal process by which each and every one of those communications was reviewed by authorities," Walker told reporters in Madison on Wednesday. "I'm confident that they reviewed them and they chose to act on the ones they've already made public."

Mental health stigma resides everywhereStigma resides everywhere, especially mental health stigma.  The urge to quiet the voices of those who live with challenges, those who are different or those whose choices don’t mirror the “norm,” seems to be overwhelming as of late. “Don’t air your dirty laundry.”  How many of us heard that admonition as children? When we talk about mental illness, too often there are only two approaches discussed: sick or well, right or wrong. We talk about strong people and the weak people, those who feed their depression and mental illness and those who stoically rise above. When we talk about mental health in such limited parameters, we strip it of the crippling humanity that makes it possible: agony, loneliness, shame, trauma and stigma. We just tell people to think the right way, get the right amount of sleep and exercise, take the right meds, and when they don’t, we tell them to go away. In our current society, the mentally ill are considered the disease as much as the illness itself.

Here’s the rub:  Change and recovery occur when things are faced.  An acquaintance asked me recently why I speak openly about mental health recovery and surviving domestic violence and sexual assault. This well-meaning person felt that by airing my “dirty laundry,” I would cause myself more pain. Actually the opposite is true. When the mentally ill speak openly, others know they are not alone. Others learn what worked and what didn’t. By speaking – at first a whisper, then a roar – we lessen pain’s power. We learn to cope, we change the norm and we affect the changes we want to see.

Be part of the conversationThere is a well-known saying in mental health and social work circles:

“Nothing about us, without us.”

Only by being part of the conversation can we affect legislation, self-advocate for better care and show society that those with mental health conditions can live healthy, productive lives.

Why should we stand up and “air our dirty laundry?”  To help those unaffected by mental illness but whom are the gatekeepers of the systems we need access to, to understand our reality. Because it reflects one-in-four person’s realities. Because stigma born from misconceptions can only be corrected by those who are affected. Because society needs to see us living lives and being productive with the proper treatment. Because we learn the most from those whose voices society tries the most to silence.

Mental Health Stigma: Airing our “Dirty Laundry” Posted on February 8, 2014 by Paulissa Kipp

Resource Highlight: Core Beliefs of Recovery

By DBSA national web site

Avid peer supporter, blogger and mental health advocate in Tennessee, Larry Drain has composed a wonderful post on the core beliefs of recovery. This worksheet lists the core beliefs of recovery and the internal beliefs we may hold that are the opposite of these recovery beliefs. The idea is to evaluate where you fall between these two beliefs and think of how you may be able to create a better life by working more towards the recovery beliefs.

You may wish to use this tool in support group meetings to help individuals think through changes they want to make.

Core Beliefs of Recovery Tool at www.DBSAlliance.org

(Check out many more chapter resources available on the Chapter Management Section of the DBSA website!)