It’s already starting…..including right here on the Tucson Citizen site……..the man, Major Nadil Malik Hasan was “crazy.”  If you have read any of my blogs before, you know how important it is to me to try and create a world where people living with mental illnesses do not feel stigmatized and one of the first steps is to stop using horribly discrimating terms like “crazy” or “crazed.”  Yes, I agree that someone who goes on a rampage killing 12 people and wounding at least 31 others is not of sound mind, but why don’t we take a look at why this happened? 

If you believe, as I do, that mental illnesses are illness just like any other, than why was this man, who supposedly treated other people with brain disorders, not receiving treatment himself?  Did  anyone not notice how he was struggling?  According to the “God Blogging” post on this site, NPR interviewed others at Walter Reed who said he was. 

Which brings us back to the same problem, the same issues that continue to plague people with mental illness and their families.  Because of the stigma, because of the inattention by our health care system that doesn’t think the mind is part of one’s physical health, because of an overburdened mental healthcare system, because people suffering from a mental illness can feel isoloated and abandoned by their support structure, people with diagnosable brain disorders are falling through the cracks.  One again, as President Obama called this tragedy, “a horrific” catastrophe has occured in this country.

Who knows what was going on in Hasan’s head……Certainly listening to war stories from our returning Veterans experiencing Post Traumatic Stress Disorder was not an easy thing to do, but why is it that no one saw the signs, especially when he was set to deploy at the end of the month? Maybe Major Hasan will be able to shed some light on our questions.

Am I being sensitive, but is anyone tired of the pink ribbon campaign? I just returned from a conference in North Carolina and even the flight attendants were wearing pink t-shirts, scarves and/or dresses. It seems like the marketing department for breast cancer research has become overly obsessed with getting their message out. I wonder just how much of the money they raise goes to pay their salaries?

Perhaps I’m just jealous, and I know this blog is probably going to cause many people to be angry with me and I apologize for that. It’s not that I don’t believe in breast cancer awareness (my grandmother had to have a double mastectomy), but as an advocate for people with mental illness I wish there was more awareness and less stigma about mentall illnesses that effect 25% of our population in any given year and causes more disability that any other illness. Yet, with proper treatment, 70-80% of people living with mental illness do recover! Still, no one knows about it! Even the National Mental Illness Awareness Week the first part of October was totally overshawdowed by “pink ribbons.”

The National Alliance on Mental Illness has called for an increase in research spending for the National Institutes for Mental Health.  Below is the statement from their website.
Please take the time to register your thoughts.

NAMI Calls for Increase in NIH Funding
NAMI is joining advocates from across the nation in asking President Obama to make medical research for improving health care a priority and support robust funding for the National Institutes of Health (NIH) and the National Institute of Mental Health (NIMH).
NAMI and other illness and patient advocacy groups are rallying advocates to contact the White House this week in support of significant annual increases for NIH.
“NAMI is pleased to join other disease advocacy organizations in support of the ‘Research Means Hope’ movement to ensure that the president’s FY 2011 budget meets the goal of making biomedical research funding a national priority,” says Michael J. Fitzpatrick, NAMI Executive Director. “Investment in medical research is the source of hope for people living with serious mental illness.”
“Direct and indirect costs of mental illness impact the federal budget overall and state and local communities nationwide, including a substantial and growing burden imposed on “default” systems such as emergency rooms, homeless shelters, police, jails and prisons.”
“Adequate investment in research on schizophrenia, bipolar disorder, major depression and other disorders is essential for our nation to address these human and financial costs. The National Institute of Mental Health (NIMH) has received more than $368 million in ARRA funding to support meritorious grants and invest in new ‘challenge’ grants and ‘grand opportunity’ grants.”
President Obama needs to continue this investment in his FY 2011 budget proposal.”
How you can help
Now is a particularly important time for President Obama to hear from advocates because he is working with his administration to determine the FY 2011 budget priorities.
• Take Action: Send a message to President Obama on NIH funding.
• Learn more: Details on Proposed Mental Illness Research Funding.

You can access direct links for taking action on the blogroll lists on this site.

Education Needed to Build Stronger Communities

As the great debate rages over healthcare reform, once again those with mental illnesses are being marginalized because none of the proposals even mention mental health insurance parity.  This is in spite of the fact that those debating the issue in our nation’s capital all have mental health insurance coverage due to the Wellstone-Dominici Act of 1996.  Also, in spite of the mental health parity act that was signed into law in November 2008 and is set to go into effect in November 2009.

Tonight at 7pm at Duval Auditorium at UMC a 90 minute educational discussion sponsored by NAMI Southern Arizona will explore the biological basis of mental illnesses, the recognition and treatment of mental illnesses in children and youth, the state of mental health insurance parity in the nation and Arizona and finally receiving mental health treatment in Pima County from a consumer and a family member’s perspective.  

Dr. H. Clarke Romans, Executive Director of NAMI Southern Arizona says  “Mental illnesses are medical illnesses. That is the starting point for understanding, as well as treatment and recovery. Mental Illness does not discriminate. No one is immune. The U.S. Surgeon General has noted that stigma is a major barrier to people seeking help when they need it. That’s why education is important.”

Panel members include Dr. Francisco Moreno,  Associate Professor of Psychiatry at the University of Arizona, Dr. Ann Lettes, Child and Adolecent Psychiatrist, Gabe Zimmerman, Representing Congressional Office of Gabrielle Giffords, Scott Whitley, representing people living with mental illness and Susan Moreno, Advocate and family member of person who had mental illness.  Dr. Romans will moderate.              

On average, people with serious mental illness live 25 years less than the rest of the population. One reason is that less than a third of adults and less than half of children with a diagnosed illness receive treatment.

 Half of all lifetime cases begin by age 14. Long delays occur—as much as a decade—between the onset of symptoms and getting help.

 Yet, “Treatment works if you can get it,” said Dr. Clarke. “We need to remove stigma and offer help in local communities. That’s a challenge that requires action. Education must precede action.”

 Mental Illness Awareness Week (MIAW) is October 4-10. Designated by Congress to promote public education about serious mental illnesses such as major depression, bipolar disorder and schizophrenia, MIAW was established almost twenty years ago. Other disorders included are post-traumatic stress disorder, anxiety disorders including obsessive-compulsive disorder and borderline personality disorder. About 60 million Americans experience mental health problems in any given year with one in four families being affected. One in 17 lives with the most serious conditions.

That’s what MIAW is about. It means taking a step forward to strengthen our community.

For more information about mental illness, please visit www.nami.org.

Established by Congress and now in its 19^th year, MIAW takes place the first week of October each year, and recognizes the National Alliance on Mental Illness’ (NAMI) efforts to raise mental illness awareness through early detection and accurate diagnosis and to reduce the associated stigma and create awareness though outreach, support and educational programs focused on brain disorders. 

Several activities are scheduled for the week beginning with the Daniel Moreno Recovery Award Event at Skyline Country Club on Friday, October 2nd.  It’s open to the public and tickets may be purchased for $55 per person by calling NAMI Southern Arizona at 622-5582.

Sunday, October 4th

PBS Station KUAT Channel 6 will air the first in the Fred Friendly series on mental illness called “Minds on the Edge” (www.mindsontheedge.org) about current issues in the mental health care system. It will be aired four times that day at 5am, 11am, 6pm, and 10pm.

October 6-8, 2009

10th Annual Community Mental Health Arts Show – Community Partnership of Southern Arizona – 2502 N. Dodge Blvd.         For information, call (520) 318-6994                   Website: www.cpsa-rbha.org

An article in the New York Times today motivated me to talk about housing.  A Federal Judge has ruled that the state has discriminated against people with mental illness.

http://www.nytimes.com/2009/09/09/nyregion/09mental.html

Above is the link to the New York Times article about discrimination against people with mental illness in poorly run adult “care” homes.  I put the word in quotes because I don’t think “care” is appropriate in many cases.  Evidently in New York privately run adult homes aren’t much better than many of the facilities in Tucson. The article states that the residents are essentially warehoused and in the case of New York, unlike some in  Arizona, their facilities are licensed!

My son spent less than 2 months in one 3 bedroom apartment that his provider had arranged for him.  It was a nightmare.  Without going into too many details, suffice it to say that street drugs are rampant, nutritional meals don’t exist, personal safety and privacy is not garanteed and in his case the house manager who was supposed to be on-site would disappear for days on end leaving the 6 residents to fend for themselves.

The Tucson Weekly reported in their article, “Slums or Salvation,” that the local unlicensed “necessary evils” are finally beginning to draw some attention and the Pima County Human Rights Committee are starting to make visits to some of these homes.

The annual state audit of the mental health system’s performance that was released this year found it fails nearly all of its patients on key measures.  Among other things,  placing them in stable housing is at the top of the list.  For those who have not been in jail or hospitalized for their illness, the system failed 86 percent of the time. 

And, now with budget cuts who knows how much worse this system is going to get.  For some, living on the streets may be a better choice, but a stable environment is key to mental health recovery and I’m not sure the wash under a bridge qualifies.

Last night I watched a segment about mental illness  on ABC’s Primetime Outsiders series.  http://abcnews.go.com/primetime  This program told the story about the the Bruce Family of Maine.  One of the sons, Willy, was diagnosed with severe paranoid schizophrenia and while he was in a delusional state he had violently murdured  his own mother.  Mr. Bruce tells the horrible story about Willy’s refusal to take medication and receive treatment.  Willy was found guilty by reason of insanity and is living in a local psychiatric facility indefinitely.  He remembers rejecting treatment because he didn’t feel he was ill and today he and his father share their story in hopes that tragedies such as this don’t happen again.  Actually, I remember seeing them on a CNN special last year about the “criminally insane.”  Their story is heart wrentching.

The program also told the story of a young woman who is gradually withdrawing from her medication with instructions from a grassroots group called  “Mad Pride.”  They believe that medication isn’t always the answer.  And maybe it isn’t.  Some of these very powerful drugs cause horrible side effects……my son gained over 130 pounds while taking one of them and he complained about not feeling “with it.”  One time when he was sent home from the hospital he was so over-medicated that he was drooling, his eyes were falling back in his head and he was experiencing slight jerking motions. 

But, I still support proper medical treatment for people with mental illness and in most cases that includes medication.  Believe me I wish it didn’t. They say it’s a “cost/benefit” analysis…….something I hate hearing because it makes it sound like some sort of economical decision one is making, not a decision that can affect how they live and sometimes die. Another important aspect to consider is that 50% of people with severe mental illness don’t have any insight into their illness…….in other words they don’t know they are ill. In most cases once they are on the correct medication and the correct dose they can recognize some of their delusional thoughts. But, that process can takes years.

Willy Bruce now takes medication and naturally is  remorseful about what happened.  His father stands by his side.  They know if was schizophrenia that took the life of their mother and wife.  I know that we still have a long way to go to find the correct treatment for people with mental illness, but for now, like chemotherapy for cancer, medications may be the best option we have.

 I just read an article in Psychology Today http://psychcentral.com/news/2009/08/20/physicians-avoid-mental-health-care/7875.html

It talks about a study done in the UK about doctors avoiding seeking advise for mental health issues.  A few different reasons are  cited…….most importantly were “career implications”,   ” personal integrity”  and STIGMA!”  That dirty little word that continues to pop up!  Almost half the doctors surveyed would seek informal advise, a small percentage would “self-medicate,” but almost 80% would seek inpatient treatment in either a private or distant facility rather than use the local NHS system because of the lack of confidence in the confidentiality of that system. (not, by the way, because of the quality of care)

Not having confidence in the confidentiality of the system is something that we can all relate to, but I want to talk about the impact of stigma for even those in the medical field!  According to the article doctors suffer depression and substance abuse as well as higher suicide rates than the general population.  And, these are the people that should understand that mental illnesses are  disorders of the brain………..just like diabetes can be caused by a disorder of the pancreas!

So, while we know that people do get better 80% of the time with proper treatment for brain disorders, even people that understand how medical  treatment can help someone may shy away from it.

I can’t wait for the new season of “House” on the Fox Network.  At the end of last season, Dr. House  checked himself into a psychiatric facility without telling any one. In the real world I’m sure he would be feeling stigmatized.  It will be interesting to see how it’s handled and if that dirty little word is addressed in any of the episodes. 

My sense is there are many medical doctors out there that are successfully living with mental illness……I know of a few, but don’t tell anyone!

President Obama shared his vision for health care reform—and stressed his support of mental health parity—at a New Hampshire town hall meeting on Aug. 11.

Linda Becher, an audience member, specifically asked the president about access to mental health care and its impact on society. The president acknowledged the seriousness of mental illnesses and the reality that many existing insurance policies do not cover them on the same terms as physical illnesses. President Obama also expressed his desire to include mental health care as part of health care reform.

Watch President Obama speak about mental health care at 48:43 or read the transcript below.

QHello, Mr. President. My name is Linda Becher (ph). I’m from Portsmouth and I have proudly taught at this high school for 37 years…I’ve been lucky enough to have very good health care coverage and my concerns currently are for those who do not. And I guess my question is if every American who needed it has access to good mental health care, what do you think the impact would be on our society?

THE PRESIDENT: Well, you raise the — (applause) — you know, mental health has always been undervalued in the health insurance market. And what we now know is, is that somebody who has severe depression has a more debilitating and dangerous illness than somebody who’s got a broken leg. But a broken leg, nobody argues that’s covered. Severe depression, unfortunately, oftentimes isn’t even under existing insurance policies.

So I think — I’ve been a strong believer in mental health parity, recognizing that those are serious illnesses. (Applause.) And I would like to see a mental health component as part of a package that people are covered under, under our plan. Okay? (Applause.)

This all sounds good, but I don’t know if  we will see any kind of health care reform if some of the fear mongering doesn’t subside. Terms like “death panels” certainly don’t help to move the legislation, in any form, forward.  Personally, I like what I hear about Switzerland’s health care system…..A basic plan is provided and they have the option to “upgrade” at their own expense if they choose.  That’s all I want……basic coverage for everyone!

Here’s what healthcare reform will do:

* Health care reform will stop insurance company abuses like  refusing to pay a claim or give you coverage because of “pre-existing” conditions. (Been there)
– Your out-of-pocket expenses will be capped. (Methinks bankruptcies will decrease!)
– Insurance companies won’t be allowed to charge women higher rates than men (been there) or drop you if you get sick.
– Insurance companies will have to cover your children until age 26 instead of dumping them at 19. (been there – they should at least  be covered under family plans while they are in  college!)

* Health care reform will hold down rising costs. (been there – I now have less than adequate coverage because I can no longer afford my old plan)
– A public health insurance option will force private insurers to compete and will lower costs for everyone. (yeah!)
– By requiring companies to pay their fair share, we’ll stop them from dumping their health care costs on the rest of us. (when I owned a small business I offered health insurance to my employees……it helped keep my personal premium cost down!  Now I understand that’s not necessarily the case if there is one employee with expensive health issues – that’s wrong, too!)

* Health reform means affordable health care will be there for you, no matter what. If you lose your job, or your children lose their coverage. (  we have all heard stories about kids moving back in as adults!) 

- When you retire affordable health care will be there for you. (it’s called Medicare and it was vehemently debated and accused of being “socialism”  when passed)

THE REALITY:   health care costs are spiraling out of control, and we all deserve quality and affordable care. Health care reform simply can’t wait.

When it comes to state dollars it certainly seems that way!

I attended a screening Monday night with some local mental health advocates of a film in the Fred Friendly series called “Minds on the Edge.”  See info at www.mindsontheedge.org  The film is a very comprehensive panel discussion on facing the issues of severe mental illness.  It will be aired on PBS during Mental Illness Awareness week the first part of October.  Afterward NAMI Southern Arizona hosted the discussion on how to help promote not only the film, but how to use the series as a catalyst to increase dialogue and education in our community surrounding this topic. Stay tuned for more information regarding the series!

We are passionate about creating awareness about mental illness, but we invariably end up talking about the inadequacies of the public mental health system and the overall frustration  with the continuing decline in the meager  funding. Then we factor in the state’s formula to give us (Tucson) less support per patient and it’s a wonder Pima County is able to provide any mental health services! 

In Arnold vs Sarn,

a lawsuit filed alleging the state and Maricopa County did not fund a comprehensive mental health system, new services called Assertive Community Treatment Programs were instituted. Case managers in Maricopa County saw the number of patients they see decreased to around 30 per person while Pima County Case managers, who are paid just enough to get by,  continue to have as many as 100 active patients in their files! Imagine what it’s like for that person when several of her patients are in crisis and need focused, immediate attention!

Sometimes I feel like the little baby bird in the nest outside my window, just waiting for my Mama bird to bring me some little morsel to help me grow and be on  my own.  The problem with our public mental health system, is that the little birdies in Pima are struggling to get just enough nourishment from the Big Birds in Phoenix to learn how to fly.

And, as we all know, it’s just getting worse.  In fact, “state only” dollars for programs for the seriously mentally ill have decreased by more than 10 million since fiscal 2001. And, funding levels have never been adjusted for inflation. What is going to happen to these people?

Our legislators need to stop turning a blind eye to our most vulnerable population and increase funding for people living with brain disorders and they also need to start treating the citizens in Pima County as equal to those 100 miles up the freeway.

For more info on Arnold vs Sarn, see S.B. 1196

I watched this beautifully put together HBO documentary on Monday night.

Mournful and emotional,  “Boy Interrupted” is about a mentally ill boy who committed suicide when he was only 15 years old. Having experienced the same tragedy, I really wanted to see how the story could be told without being exploitative or sensationalized. They couldn’t have done a better job……..the parents put the film together. Both of them are in the film industry, but a good part of the documentary was made from actual “home” movies that they and that Evan, their son had personally filmed. Some of the clips even give you a sense of how difficult life for Evan was when he was struggling with his bi-polar illness that wasn’t diagnosed until he was eight years old. Eight years old??? I’m sure you’re thinking that’s incredibly young…..and it is. But, it happens. And in Evan’s case, he started threatening suicide as early as age five.

His parents did everything they could to get Evan help. Finally by age 10 he was experiencing some normalcy in his life with the help of medication, therapy and family and academic support. Tragically, at age 15 when all seemed to be going well he ended his life by jumping from his bedroom window several floors up. He left a note explaining how disconnected he felt…….something many 15 year old boys will experience. But, for Evan his sadness was overwhelming and his bi-polar illness prevented him from facing another day. In my case, I always say, schizophrenia took my son. – I know he wouldn’t have purposely “ripped my heart out.”

According to the National Alliance on Mental Illness about one in ten children have a serious mental or emotional disorder, but fewer than half receive any mental health services in a given year. Over half of students with a mental disorder age 14 and older drop out of high school – the highest dropout rate of any disability group and many of the teenagers that have a mental disorder “self-medicate” with illegal drugs. Despite effective treatment, there are long delays, sometimes decades, before people seek and receive treatment.

These are pretty grim statistics, but I’m hopeful. As I have said before, I see people every day that have achieved mental health recovery. It’s something they have to work on- every day, and who knows, maybe one day we’ll find a cure or at least something to stop someone from wanting to end their life. Suicide causes unimaginable pain for those left behind.