Sunday, January 31, 2010

Dear Media Matters - Does It?

The following is a copy of an e-mail I just sent to Media Matters. This falls in the pet-peeve/Mother Clucker creating category. This is what gets my feather's ruffled up!

I am very sensitive when the terms mental illness, schizophrenia, psychotic, etc., are bandied about incorrectly, but when an organization like Media Matters reprints it and basically blows it off as a shortcoming, I get really pissed off.

To Whom it May Concern:

My understanding is that you report when the media misinforms the public. Is that correct? I would like to see more coverage on issues related to Mental Illness. While there is little media coverage on issues related to mental illness, unless someone who is untreated has a psychotic episode and hurts people, misinformation does occur. Given by the number of articles that came up when I searched on the words "mental illness", I do not think much fact checking is going on by your organization in this area.

To that end, I will start submitting tips whenever I see errors in the coverage of issues relating to mental illness, specifically as it deals to policy issues about homelessness and incarceration.

However, I want to address an even more disturbing issue of your own reporting. The first article that came up in my search was "WND touts book claiming liberalism is mental illness", dated Nov. 24, 2009. The last line of the article was "Given WND's track record, I can only assume WND is engaging in a Rovian effort to accuse their counterparts of their own shortcomings. "

Mental Illness is not a shortcoming. People with schizophrenia, bipolar disorder, clinical depression and a list of other illnesses are sick, just like someone with Alzheimer’s. It is a brain disorder that affects the mind, but it is not a shortcoming. It is much more devastating.

By minimizing the often horrific effects of brain disorders categorized as "mental illnesses", you are creating an image of someone who has a mental illness as someone who can help himself or herself. People with brains disorders such as schizophrenia cannot help the fact that they are ill. They need treatment, not ridicule.

Not pointing that out in your critique of this book is just as damaging to the efforts made on behalf of the millions of people with real mental illnesses, as the claims made by the book itself are to liberalism.

Please, do a better job.


Ilene Flannery Wells

Tuesday, January 26, 2010

Paul's Legacy Foundation - Since there are no "Jerry's Kids" for Schizophrenia

DJ Jaffe, co-founder of the Treatment Advocacy Center wrote, "Trying to gain sympathy for mental illness, by only displaying the highest functioning individuals, is like trying to end hunger by showing the well-fed." He is spot on.

This was a line I took from an article DJ wrote about Mental Illness Awareness Week (first full week in October). He explained that many agencies try to end "stigma" by diverting our attention away from people, like my brother Paul, who are treatment resistant and incapable of taking care of themselves. All this does is divert our attention from the people who need our help the most. Maybe that accounts for some of the incredulous looks and comments I get when I talk about Paul. Maybe most people think all of the former patients of the state hospitals were "cured".

Based on the commercials for depression, all we need are some drugs and we're back in business. There are no commercials for anti-psychotic medications. There is no one saying "I used to have hallucinations but now that I take XYZ drug, they're all gone. Now I have a good job and own my own home." However, this is basically what is implied when we read almost anything about severe brain disorders.

No one ever wants to admit the ugly truth; some people just do not get better. It is that way with almost every illness, why should it be any different with mental illness?

I wrote about how we rush to help the people in Haiti while we have ignored the after effects of our own man-made disaster. We just held a big telethon for the Haitian crisis - every major news channel and others simulcast the event. Millions of dollars were raised - all for a good cause. I am not saying we shouldn't give to Haiti, as some have claimed, but why do we seem to do absolutely nothing for people with severe brain disorders?

There are no "Jerry's kids" to parade around; there is no poster child to use to help raise awareness. Or is there?

How about Paul? I just started a Facebook Cause called Paul's Legacy Foundation. In Paul's memory, I am going to raise awareness and money for the agency I feel best advocates on behalf of people like Paul. The Treatment Advocacy Center does just that.

If you are a friend of mine on Facebook, expect an invitation to Paul's Legacy Foundation, otherwise, please go directly to the Treatment Advocacy Center website and donate from there. Either way, the donations go directly to TAC.

Thank you!

Sunday, January 24, 2010

Why I cried

I can relate to this. I felt this way after Paul died. I don't feel this way now. I am determined, perpetually.

Why I cried

Would You Do This to Your Grandmother?

Would You Do This to Your Grandmother?

I started to write about "the economics of long-term care for chronic mental illness" as Dr. Insel of the National Institute of Mental Health so succinctly put it. I believe that the costs for police, ambulance, social services, etc, during my brother Paul's tenure of freedom, combined with the Mental Health services he received, probably cost more than had he remained in long-term care. But what if it didn't? What if it did cost less to put Paul - and us - through the 8 years of infected feet, inadequate food, violent outbursts, and Paul's cycling in and out of local hospital psych wards, which ultimately lead to his early death? Was it worth it? I don't think so.

When I am asked how I can advocate for long-term care (institutionalization) and to justify the cost, I usually have to explain how sick Paul was and how he could have hurt himself or someone else, by accident. If he lived on his own, he would never have been able to manage his medications; he certainly didn't have the life skills to feed and bath himself properly. But doesn't this sound similar to how an Alzheimer's patient is sometimes described?

Think of it this way; if a nursing home chain were suspected of abuse, would we shut down the nursing homes? Maybe, but would we also release the patients into the community, tell them to learn to live on their own, cook their own meals and manage taking a list of medications on their own every day? I don't think so, but that is exactly what we did to people like Paul.

Abuse was not the overriding factor in the hospital closings however, money was. The states went too far and released the sickest of the sick. Now we see them on the streets and we pay for their long-term care in prisons and through our tax dollars that support the police, ambulance and other community services. According to The Treatment Advocacy Center, virtually no long-term beds are available to people like Paul, who cannot afford private hospitals.

Would we ask about the economics of long-term care for the sickest Alzheimer's patients? Sure, but with the assumption that they actually receive the appropriate, humane, long-term care they need. We would talk about the best delivery method for that care, not whether or not they should get it in the first place. Why don't we treat the sickest mentally ill patients the same way? The same issues regarding civil liberties compared to medical needs and physical/mental ability apply, don't they?

I don't get it. I'm just the sister of someone who was very sick. The illness was in his brain. It caused him to be confused and detached from reality. No drug therapy brought him back to reality. Sometimes he became so agitated, we were afraid of him. He was incapable of taking care of himself. This sounds like it could be a number of brain disorders that for some reason are not considered a Mental Illness, like Alzheimer's or even the after affects of a brain injury.

If long-term care is required for two people, one has Alzheimer's and one has schizophrenia, why is only Alzheimer's deemed worthy by Medicaid? Why is long-term care for illnesses in other organs such as chronic lung disorders, cancer, heart disease all deemed worthy by Medicaid while brain disorders such as schizophrenia and bipolar disorder are not? The main reason is that Medicaid laws state that patients in Institutes of Mental Diseases were unqualified to receive Medicaid reimbursement (well the institutions were, but effectively the patients were the ones that were denied care in the end).

This is federally sanctioned discrimination whether it is financially justified or not.

Please contact your US Representatives and tell them that if we really want to end discrimination against people with mental illness, the IMD Exclusion (IMD stands for Institutes for Mental Diseases) should be repealed. Support H.R. 619 sponsored by Rep. Edie Bernice Johnson of Texas, which does just that.

For more information about the IMD Exclusion, please read my post End Discrimination Against the Mentally Ill or go to the Treatment Advocacy Center Website.

Friday, January 22, 2010

Female Football Fans Unite - Call CBS - No Dobson Ad

Okay, this is a post that is a direct result of what I like to call "getting my Irish up". I just heard that James Dobson/Focus on the Family group will air a 30-second ad during the Super Bowl to proselytize against abortion. I say, keep your proselytizing out of my football viewing.

Everyone who knows me knows I am a big football fan. They also know I am pro-choice. But even if I were anti-choice (I won't say pro-life because I don't think these people give a damn about people who are actually alive.) I wouldn't want to be preached to while I am watching football anyway. Keep your morality for your pulpits, not the public moshpits, Dobson.

I wonder, is Dobson trying to balance out all of the erectile dysfunction ads aired during the Super Bowl? If so, then why target women? Ah yes, it's all our fault to begin with as in Eve and the apple. It all comes back to that. That is why we should not be allowed to make our own decisions about our own bodies - especially when it's about an outcome of the devil's act - sex. It's the same reasoning that allows insurance companies to cover Viagra but not birth control.

Insurance companies will pay to allow men to get it up, which of course means to allow them to have sex, but punish women who want to prevent unwanted pregnancies, who want to avoid abortions in the first place, by not covering their birth control. Then of course, since it's all their fault for getting pregnant in the first place, the sluts that they are, women are punished further by being stigmatized when they have to walk through the picket lines to receive a legal medical procedure.

The thing is...the fundamental beliefs that Focus on the Family promote really do include the ideas that women are the problem, that they should be subservient and should submit to their husband in all things. Women and their children are property to men like Dobson.

Dobson needs to keep his so-called morality out of my football. Since he thinks he's preaching to the boys' club, however, maybe he should tell them to keep their penises in their pants and nip the problem in the bud, so to speak. Instead, he praises the fact that Mrs. Tebow ignored her doctor's advice, which of course could have left her other four children motherlesss. Yes, the burden is always on the woman to make the ultimate sacrifice, isn't it?

The fact that the outcome of Mrs. Tebow's decision was a good one, that both the mother and child survived, is irrelevant. The fact is, this was Mrs. Tebow's choice; Focus on the Family wants to take that choice away from me. He would deny me the very act of making that choice - a choice Mrs. Tebow had the freedom to make - for fear I may choose abortion.

He is being entirely hypocritical - and UnAmerican, I might add. Americans are proudly independent and feel they should be allowed to make such a personal decision without interference from the government. Isn't that what the conservative right is always hammering about? By wanting to deny me that right, Dobson is treating me like a child - less than an adult - and that is unconstitutional.

Why would I want to watch a TV show that would allow Dobson to promote his beliefs against me? Believe me, I won't if this ad gets aired. I can live without football, but not without my principles.

To call CBS to complain about the Dobson ad, call 212-975-4321. I asked to talk to the person in charge of advertising for the Super Bowl. Keep doing that until a person says "Well, maybe I can help you". Then tell the person that you will not watch the Super Bowl if the Dobson/Focus on the Family ad is aired.

Wednesday, January 20, 2010

The Earthquake Within our own Borders

When a tragic event like the earthquake in Haiti occurs, the hotlines are a buzz and now we can even text our donations to help the hundreds of thousands left homeless and in need. Everything is made easy for us. Our news programs flash the telephone and text numbers while bombarding us with devastating images. I just received my umpteenth e-mail alert.

While I applaud these efforts; the heartfelt generosity I see outpouring from my countrymen and women to strangers across the globe makes me wonder; how can many of these same people literally step over the homeless on our own streets? We divert our glances and quicken our pace. Sure, some of us give money to charities, but the homeless remain.

An earthquake occurred within our own borders a long time ago and we have been feeling the aftershocks for decades. The US homeless population rivals the numbers of people afflicted by the Earthquake in Haiti and up to a third have a severe form of mental illness. We have become so accustomed to it that we don’t even see the victims on the street anymore.

What happened? Well part of what happened was that beginning in the 1960’s, an explosion of former state hospital patients were released into our communities. The premise was that community mental health services were not only more humane, but less costly.

The whole process was coordinated poorly; housing could not be secured to keep pace with the number of patients being released and remains a problem today. This started the homeless problem and since housing continues to be a problem, so does homelessness. On top of that, the sickest of the sick were also released; those who, through no fault of their own, would never recover enough to participate in their own care. My brother Paul was one of them.

The flow of patients released into the community continued, unabated, over decades, and the homeless population continued to grow. So did our prison population. The sickest of the sick, not only do not understand they are sick, they do not have the life skills required to maintain their physical, let alone mental health.

Yes, I can hear you. Many people with a severe mental illness can live productive lives in the community. I am not talking about them. Yes, the community system can work for many people with severe forms of mental illness, but not all.

The sickest of the sick cannot manage the maze of rules and regulations they run into on the “outside”. They don’t even know how to cook their own food and buy their own groceries, yet they are expected to do just that. Adult homes are the last resort for people like my brother and now they will be closed due to the latest Supreme Court ruling that they are unconstitutional.

Virtually no long-term care facilities are available to people who are so sick due to a mental illness that they are made incapable of living on their own – to the point where they could die – unless of course, they also have a debilitating illness in some other organ of their body, or the person is over 64 or under 21. I know, it’s confusing isn’t it? But that’s the way it is. This is discrimination pure and simple.

I think about the hundreds of thousands of homeless people in our own country; a large portion of them are just plain sick and need our help. Many wind up in prison because of incidents that occurred while they were having a psychotic episode. They are all someone's son or daughter, sister or brother, yet we still just step over them or look the other way. It's very sad.

For more on why there are no long-term care facilities available for people with severe mental illness and what you can do to change it, please read my post, End Discrimination Against the Severely Mentally Ill.

Sunday, January 17, 2010

Ask Questions!

Who knew that if you just sent the Director of the National Institute of Mental Health a well thought out question, that you would get a response, and so quickly, I might add? And, in spite of spelling his name wrong right off the bat! Who knew that no one has put together the information I am seeking (yet)?

By the way, it was perfect timing because I had been talking to the Treatment Advocacy Center's new Executive Director that very day and he told me they didn't have the numbers I needed either. I was able to send back a prompt reply to Dr. Insel with that information, expressing my interest in hearing what his colleague's had to say on the matter.

There is hope. The only way to get answers is to ask questions.

On 1/14/10 9:42 PM, "Ilene Wells" <> wrote:

Dr. Tinsel,

I read your editorial, Assessing the Economic Costs of Serious Mental Illness, in the June 2008 edition of the American Journal of Psychiatry with much interest. I am looking for information on costs of care for the severely mentally ill who were former patients in state hospitals. Specifically, I am looking at a small segment of these former patients - those who are resistant to any type of therapy, drug or behavioral, and who are rendered incapable of independent living, yet were still released. I know they now reside in adult homes, or are in prison or homeless, but your figures include other individuals as well.

Basically, what I want to determine is this: How does the cost of moving these individuals into the community compare to costs of keeping them in state hospitals - or possibly in smaller, nursing home like facilities? Are the costs of the community services: police, prison, ambulance, ER rooms, acute stays in local hospital psych wards, stays back to the state hospital periodically, etc., higher or lower than permanent in-patient care in a hospital or nursing home-like facility?

I was wondering if there was a way to extrapolate some of it from your data, which seems close. However, you include more numbers than who were former state hospital patients. Do you think your figures can be used in some way anyway? Could we just say a certain percentage of the costs you outline are attributable to this group of people with severe mental illness?

Below is a link to a piece I wrote for the Psychiatry Services journal for their Personal Accounts section. It will be published in June, 2010. It is about my twin brother, Paul, who spent 22 years in NY state hospital and then 8 in assisted living and adult homes and then finally in a nursing home, which was paid by Medicaid. I truly believe that his early death was partly due to his release from the state hospital.

I am not saying that the hospitals were the Garden of Eden, but whenever Paul was back at the state hospital, or in a nursing home, his mental and physical condition was at its best (yes, even when he was in the nursing home fighting cancer). But once he was released from the care of the state, like I say in my story, there was no going back. My family met with stone walls when they asked about moving him back permanently, even after Paul went without food for a month, and had been picked up by police. He had even asked an 11-year old girl into his apartment (I never did write about that particular incident). Luckily, she didn't go in.

So, as you can see, this is a personal issue for me. I believe that when you add up the costs of all of the community services, and then factor in the lack of quality of life these poor souls have - in prison, on the streets or in adult homes - no one can say we have done right by these people. But since money talks, I need to know how we, the taxpayers, have fared financially.

Central to this issue, in my opinion, is the Medicaid Law which excludes payments to patients in "Institutes of Mental Disease" called the IMD Exclusion; effectively it is federally sanctioned discrimination against the poor with severe mental illness. Given the recent court ruling against the adult homes in New York City, timing is crucial because these facilities will probably be closed. Where will the residents go?

I believe that if the IMD Exclusion is repealed, beds would become available in long-term care psychiatric facilities. I think that through laws that are already in existence, like Kendra's Law in NY, we would gradually get people like my brother out of adult homes (which are dismal places anyway), off the streets and out of prison, and get the long-term, dignified, care they deserve. I know it would be the humane thing to do, but I want to be say that it would also be financially worth it.

I am currently expanding my piece about Paul (they only gave me 1600 words) and would like to be able to speak intelligently to the cost issue. Even if long term care is more expensive than all of those other services combined, at least I can then speak to the intangible costs on society which you highlight as well.

---------- Forwarded message ----------
From: Insel, Thomas (NIH/NIMH) [E]
Date: Thu, Jan 14, 2010 at 9:53 PM
Subject: Re: Costs of long-term facilities compared to community services for severely mentally ill
To: Ilene Wells <>
Cc: "Schoenbaum, Michael (NIH/NIMH) [C]"

Dear Ms Wells,
Thank you for your very thoughtful letter. You are not the only person to suggest that long-term care facilities had special advantages for those with chronic mental illness. I agree that a financial argument might be helpful in making this case, but I don't think we have good numbers (yet) for the question you are asking. I would like to share your note with some of my colleagues here at NIMH to see if they have a better idea of how to address the economics of longterm care for chronic mental illness. You also might contact the Treatment Advocacy Center which works on this same issue.
Dr. Insel
Thomas R. Insel, MD
Director, NIMH/NIH/HHS

---------- Forwarded message ----------
From: Ilene Wells
Date: Thu, Jan 14, 2010 at 10:33 PM
Subject: Re: Costs of long-term facilities compared to community services for severely mentally ill
To: "Insel, Thomas (NIH/NIMH) [E]"
Cc: "Schoenbaum, Michael (NIH/NIMH) [C]" , J Pavle

Dr. Insel,

Thank you for your response. I have talked to the Treatment Advocacy Center. I spoke with Jim Pavle today, in fact. Like you, he said the numbers for the group of people I want to isolate are not available. I look forward to hearing your colleagues' thoughts on the matter. I would really appreciate this because I think I could write a very compelling argument to change the current policy assuming the costs come out the way I think they will.



Monday, January 4, 2010

Cluck You Fox!

Yesterday began my official boycott of anything owned by Rupert Murdoch including Fox TV, Fox News (which I never watched anyway), FX and whatever other TV stations he controls. I never read the newspapers and magazines he owns, except for the Wall Street Journal, but I don’t subscribe to the WSJ. I will however, purposefully NOT link to any articles on the internet that I see originates from the WSJ. I know I can get my information elsewhere.

Rupert Murdoch’s greed got the better of him when he threatened to take his stations and leave the sandbox. At issue was the money for stations that we viewers can get for free if we don’t have cable – FX, Fox, and others. Murdoch wanted Time Warner to start kicking in money to have these stations included on basic cable. If they didn’t, those stations would be pulled from Time Warner’s list of options to their customers.

I decided that I was sick of all of this. I took stock of the few shows I watch on the Fox stations and decided I can live without them. They are Bones, American Idol and NFL Football (oh, and my guilty pleasure – Wendy Williams – but she re-airs on the BET network). I love Bones and have been a huge American Idol fan since the beginning, but it’s not worth it anymore. It’s not like I don’t have other, more important, things to do with my time anyway. And besides, I can listen to my local teams’ games on the radio – until that too is taken from me, I suppose.

This has nothing to do with politics, although the fact that his politics repulses me makes this easier; it has everything to do with money and how the public are pawns between two large corporations. Since Fox was holding Time Warner over the coals, at our expense, I thought about what not having access to any of their stations would be like. I realized it wouldn’t be that bad.

So, Cluck You Fox! Good-bye Bones; I can watch reruns on TNT. Good-bye American Idol; the world won’t stop spinning of I don’t watch you. Good-bye NFL on Fox; you are just a game anyway.

I feel better already.