Renew Kendra's Law - This Time Permanently

Kendra’s Law is a New York law that allows courts to order certain violent and/or recidivist mentally ill individuals to accept treatment as a condition for living in the community. This is called Assisted Outpatient Treatment (AOT). It also allows courts to commit the mental health system to providing the treatment.

Some people, as a result of mental illness, have great difficulty taking responsibility for their own care, and often reject outpatient treatment offered to them on a voluntary basis. These individuals often commit suicide; become homeless; end up in jail; or, on rare occasions, are involved in acts of violence. Family members and caregivers often must stand by helplessly and watch their loved ones and patients decompensate to actual "dangerousness" before they are allowed to facilitate treatment. 

Kendra's Law provides residents in New York State with a tool, Assisted Outpatient Treatment, that has proven to help in these situations.

Since its original passage in 1999 and renewal in 2005, Kendra’s Law has been the subject of several studies, which found that Kendra’s Law:

• Helps the mentally ill by reducing homelessness (74%); suicide attempts (55%); and substance abuse (48%).
• Keeps the public safer by reducing physical harm to others (47%) and property destruction (43%).
• Saves money by reducing hospitalization (77%); arrests (83%); and incarceration (87%).

In anticipation of Kendra’s Law’s expiration on June 30, 2010, two bills have been introduced. The Assembly bill, A10421, introduced by Assemblymember Aileen Gunther, would not only renew Kendra's Law, but would also make it permanent.  The Senate bill, S7254, introduced by Senator Thomas Morahan, would renew Kendra's Law but allow it to expire on June 30, 2015.  

I don’t know about you, but I don’t think the problems that Kendra’s Law addresses will magically go away on June 30, 2015.  Do we want to go back to the higher numbers of homelessness, suicide attempts and substance abuse that this law has helped reduce? I don’t think so.  I think the statistics prove the worth of this law and there is no reason to have to go through another renewal process.  Kendra's Law should be made permanent.

Moreover, the Assembly bill would implement important fixes to make the current law stronger and more consistently applied; it would:

• Close the loophole whereby a person under a court order can evade the court order by moving to a different county.  This can reduces costs and provide treatment in a timely manner.
• Trigger an automatic review of the court order before it expires to determine if it should be renewed and establish a reporting mechanism to help the Office of Mental Health monitor these expirations.  This can prevent a lapse in treatment which can have devastating effects.
• Provide training to judges so the law can be applied consistently.
• Trigger an automatic review, prior to the release of patients who had been involuntarily committed to an in-patient hospital, to determine if the patient should be considered for AOT.  This can prevent a lapse in treatment, which can have devastating effects.
• Trigger an automatic review, prior to the release from prison of inmates who received mental health services, to determine if the inmate should be considered for AOT.  This can reduce recidivism.
• Provide a stronger mechanism for family member of the mentally ill and members of the community to petition the court to have a individual investigated for AOT. 
• Allow courts to consider previous behavior, not just the current behavior of an individual being considered for AOT.  This is important because it can provide insight into how the individual would survive in the community with and without treatment.
• Provide a mechanism to bring Kendra’s law to smaller communities that do not have qualified doctors.  Thus, it expands the benefits of Kendra’s Law to help all communities, not just the larger ones.
• Require physicians to make reasonable efforts to gather useful information from the consumer’s family and significant others in order to develop a treatment plan.  Often family members can fill in gaps that the consumer does not, or is not able to, provide.
• Incorporate research that shows treatment plans of one-year have been more useful to consumers and would allow AOT plans of one-year, not just six months, to be ordered.  This can not only improve outcomes, but also it reduces costs associated with each renewal.
• Improve the renewal process when an otherwise qualified petitioner other than the original petitioner requests a renewal. This avoids additional court hearings, which saves money
• Allow individuals who materially violate their order to be taken to a hospital for admission assessment without holding a new hearing that could delay treatment. (This does not mean the individual would automatically be admitted for in-patient care, rather it eliminates requiring a court order for the evaluation.)
• Eliminate the need of having a psychiatrist testify in court if the consumer and attorney, want to stipulate to the psychiatrists findings.  This saves money.

The Senate bill has no such fixes.

The choice is obvious to me.  Not only would the Assembly bill (A10421) make Kendra’s Law permanent, it would improve the law to reach more people, improve compliance, and reduce costs. 

Please contact your state representatives and urge them to support A10421. Make Kendra’s Law permanent.

For more information, please visit the New York Treatment Advocacy Coalition website.

Spread the Word: Repeal the IMD Exclusion

My nephew sent me this message today:

Hi Ilene, Dad and I had a long discussion over Easter weekend regarding the IMD exclusion. This exclusion is nothing short of disgusting. It is a prime example of how the poor and mis-fortunate are treated in our country. I apologize but I was never fully aware of how, why, and when this exclusion was enacted. Let me know how I can help!

This was my reply:

Hey Mike - thanks for writing! 

First of all, don't feel bad you didn't know - I didn't know about it until a year or so ago. It seems like most people in Congress don't really understand it either, which gets me to my first point...

The first thing you can do is write to your members of Congress and ask them to support a bill that has already been introduced to repeal the Medicaid Institutes for Mental Diseases (IMD) Exclusion. It is HR 619, and it was introduced in Jan. 2009, by Rep. Eddie Bernice Johnson of Texas. It only has one other co-sponsor and has been sitting in committee for almost 16 months.

Explain to your members of Congress that the partial repeal of the IMD Exclusion, offered by the new health insurance reform law, would not have helped Paul because it only pays for emergency hospitalization and stabilization. Paul never had trouble accessing these services - and Medicaid paid for it. What Paul needed was long-term care. Remind your members of Congress that someone with Alzheimer's can get long-term care with Medicaid subsidies, but someone with Schizophrenia cannot - that is discrimination, pure and simple.

When your members of Congress start to bring up the costs involved in paying for their care, explain to them that "we" the "tax payers" are already paying taxes to support the extra burden on our local ER departments, Ambulance companies, local hospital psych wards, police departments, courts and prisons. How they figure out how to redistribute where our money goes to cover long-term care for people with Schizophrenia, as we do for people with chronic lung disease or Alzheimer's, is their job - that's what we pay them to do - they should figure it out because "we" are already paying for this through local, state and federal taxes. The problem is that the people are still suffering because they are homeless or in prison, rather than in treatment.

The other thing I have started to do is to put pressure on my state legislator. The states need to pressure the federal government to repeal the IMD Exclusion. The states have been bearing the full burden of costs to provide long-term care, which is why they keep pushing them out quicker and sicker. The states have been balancing their budgets on the backs of people like Paul for decades. If the federal government helped with some of the costs, perhaps they would get the care they need.

Finally, you can ask all of your friends to do the same thing. The more people we educate on this issue, the more people will react the same way you have and will force the issue.

For more information on the IMD Exclusion - you can direct people to the treatment advocacy center website - or just google the term "IMD Exclusion" - there is a lot of information on it on the web.  Also, go to this article I had published in the Op-Ed News website.  When you get to the bottom, there will be an "Action" section with a  link for you to write to your members of Congress. 

Thanks again Mike!

And thanks to all of my 9 followers so far that may read this and write to their members of Congress.   Now tell your friends!

The New York Crank: America already has death panels. They're called health insurance companies.

This is the first time I have linked another persons blog to mine...This is spot on...

The New York Crank: America already has death panels. They're called health insurance companies.

Even though the health insurance reform bill has passed and is now law, the very fact that these same insurance companies are actively looking for ways to get around the law is witness to the need to read this article.

Private health insurance companies have one thing in mind - and that is to make a profit and satisfy their shareholders.  Policy holders who make claims only get in the way of profits.  Insurance companies have done whatever they can to deny claims.  This will not change now that - ta da! - Reform is here!


The only way to really change things is to have a single payer Medicare for all system.  With a 3% overhead, Medicare certainly beats private insurance.  Yes, it's not perfect, but nothing is.

What Is NOT In The Health Care Reform Bill For Me

I read an article the other day entitled Healthcare Reform – What’s In It For You Today? This was my reply:

As an advocate for people with severe mental illness (the guy pictured with me in my profile is my twin brother Paul who was committed to a state mental hospital in 1977) this health care reform bill means almost nothing. Since Paul is no longer alive, I am speaking for him and for the hundreds of thousands of former state hospital patients who were forced into a community mental health system that does not work for them.

My main focus is the repeal of the long standing, discriminatory, Medicaid law called the Institutes for Mental Diseases (IMD) Exclusion. This provision of the Medicaid law states that people in “Institutes for Mental Diseases” are not eligible for Medicaid subsidies and almost single handedly is responsible for the homelessness, incarceration and death that people like my brother Paul face today.

The Senate version of the health care reform bill only offers a partial repeal of the IMD Exclusion and only for emergency hospitalization and stabilization. Paul never had a problem accessing emergency hospitalization and stabilization. Medicaid even paid for it. Therefore, this health care reform bill would not have helped him.

People like my brother, who need long-term care, are still facing federally sanctioned discrimination. I have likened this to forcing a person’s grandmother, suffering from Alzheimer’s, to live independently and to manage their own treatment plan. While many people with severe mental illness can manage the community mental health system, people like my brother cannot. He was among many who also have anagnosnia, which is the lack of insight into one’s own illness. This is common among many, but not all, people with schizophrenia and bipolar disorder.

My brother would vehemently state that he was not sick and at the same time talk about the 200 children that came out of where his teeth once were, or about the camera that was implanted in his head (among hundreds of other delusions that would rotate into his conversations). He was just as delusional, full medicated, the day he was released as the day he was committed, yet we were told by his case worker that Paul had to “learn to take care of himself”. Would you do that to your grandmother with Alzheimer’s? Of course not, but that is what Paul and hundreds of thousands of people like Paul, was forced, and failed, to do.

Yes, the state hospitals were/are horrible places, but we shouldn’t just kick out the patients and ask them to fend for themselves, which is essentially what we have done.

Like all illnesses, some people with severe mental illness do not recover. Like all people with a debilitating illness, some people with severe mental illness need long-term care, yet are being denied this care while people with illnesses in other organs of their body are not. This is the very definition of discrimination and the IMD Exclusion is the law through which the federal government allows this discrimination to continue.

You ask what is in this bill for me today. Well, since I am speaking for my brother today, I say nothing.

To which, the author of the article, Rick Ungar, replied:

Flan-reading what you write here leaves me-and I would hope anyone who reads it – speechless. I have to admit that I am not as familiar with this area as I should be. I promise to become more familiar on the subject and to spend some time writing on it. I will also search to see if there is anything of benefit in the bill – even if down the road – that would benefit people who suffered as your brother did.

This seems to be the reaction I get almost every time I tell Paul’s story. I am hoping that the more people learn about this issue, the sooner the IMD Exclusion will be repealed. Please help spread the word. Please contact your members of Congress and urge them to support HR 619, which calls for the complete repeal of the IMD Exclusion.

HR 619 was introduced over a year ago by Representative Eddie Bernice Johnson of Texas, but has pretty much been ignored since it was introduced. It has two co-sponsors and the only action on the bill was to forward it to the House Committee on Energy and Commerce when it was introduced over a year ago.

I am hopeful that journalists like Mr. Ungar want to learn more about the IMD Exclusion and hope he follows through on writing on the subject.  He has a much broader audience than I have. Mr. Unger, and anyone else that wants to learn more about this issue, please go here, here and here to find out more about what the IMD Exclusion is, how it came into being and the damage it has done.

In anticipation of the first question you will be asked when you urge for the repeal of the IMD Exclusion; “how will we pay for this?”, my reply is this:

“We”, the American taxpayers, are already “paying for this”. We are paying for it through increased financial burdens to police departments, local hospital Emergency Departments and Psychiatric Wards, social service agencies (housing is a huge issue), judicial system, jails and prisons (prisons in CA and NY are now the largest psychiatric hospitals in the country, where the mentally ill get inadequate or no treatment and where solitary confinement is the norm).

No analysis has been conducted (why???) to analyze how much this is costing overall, but factoring in the qualify of life that has been lost into it, I say the people affected by the discrimination of the IMD Exclusion, the people who are homeless and incarcerated, are paying a very high price for this social experiment that started over 45 years ago, don’t you? People like my brother Paul, who died too young, have paid the ultimate price – with their lives. This doesn’t even begin to take into account the lives affected through the violence committed against and by people in a psychotic state.

New York State is looking at the renewal of Kendra’s Law, which provides a mechanism to get people with an untreated mental illness into treatment before they become a danger to themselves or others. The law should be made permanent and my favorite mental health advocacy organization, Treatment Advocacy Center is currently working tirelessly towards that goal. However, what good does it do to get people into treatment when they do not have access to all forms of treatment that is made available to other people who don’t happen to have an illness in their brain? The law has helped tremendously to reduce violence, move towards treatment and away from incarceration, but it is not the total answer. This brings me back to the answer I gave to Mr. Unger regarding what the health care reform bill means to me today - speaking for Paul, it means nothing.

The Medicaid Institutes for Mental Diseases (IMD) Exclusion needs to be repealed, period.

Wear Your Bathing Suit Through Security The Next Time You Travel

Yesterday we all learned that Chicago O'Hare Airport will be implementing the full-body scanners. If we won't go through the full-body scanner, we will be subjected to a pat-down, instead. Those are our only options. If I have to choose between going through a full-body scanner or be subjected to a pat-down, I say neither!

Maybe it's because I was sexually assaulted when I was 18, but there is no way in hell I am going to allow a TSA staffer to look at my naked body or feel me up to get on a plane. If anyone one else out there feels the same way as I do, please join my Facebook group; Wear Your Bathing Suit Through Security the Next Time You Fly.

According to this article, a representative for a company that sells the scanners admits that the machines "show intimate piercings, catheters and the form of breasts and penises". While there have been reports that the genitals will be blurred out, a woman's breasts won't. So, the TSA staffers will get a boob show at least, the Full Monty at most. This is not acceptable, and I will not be subjected to a pat-down every time I fly, either.

The last time I had to have a pat-down I felt molested. This was when they basically felt up a woman to determine we weren't hiding anything in our bras. The TSA agent tried to do it in a non touchy way by using the back of her hand, etc., but still... This is a no-win for travelers and a big win for the scanner manufacturers. I doubt it will mean anything to terrorists.

Also, there is still some uncertainty as to how dangerous the machines are, because a scan with microwaves used one type of scanner corresponds to 10,000 mobile phone conversations. The scatter x-ray technology used on another scanner, which I believe will be used in Chicago will dose us low radiation, equal to what we are exposed to in flight, so it is like we are flying twice. For frequent flyer's like myself and other business travelers, the jury is still out on what this does to us.

So, what am I going to do the next time I fly out of Chicago? Well, maybe I should just go through Midway instead. That would be the easier way out. But if I can get a cheaper flight out of O'Hare, then I don't think I should have to pay a financial penalty to protect my privacy. Also, full body scanners will be used everywhere, eventually, so I'll have to face this at some point in time. Besides, I think it is obscene and that is the point I want to make.

Have we really gone this far? Have we failed diplomatically to the point of no return where we subjugate innocent men, women and children to displaying their naked bodies to strangers in order to get on a plane? Is this what we are protecting our freedom for? If so, I am deeply saddened and embarrassed for the world we live in. I know this will bring some "well, if you can't handle it, move" or, "if this will prevent another 9-11, then I'm all for it" comments. I refuse to accept either position.

To the first, I say that I want to stand my ground for personal privacy and the tyranny of failed government policies. If the Bush administration hadn't taken the shoot first, ask questions later approach after 9-11, we could have possibly avoided war altogether. Instead, Bush created a never-ending war against terrorism, which should not be fought with guns and ammunition, but with diplomacy. Why should I have to abandon my country because our former administration made things worse, not better? And why is the Obama Administration continuing Bush's failed policies? I need to stick around to change things, not run away.

I am also angry that the Obama Administration is believing the fallacy that these scanners will really be effective. There is no way to guarantee that this will prevent another 9-11. There is also reason to believe that these full-body scanners would not have detected what was in the Underwear Bomber's drawers. So, what's next? Will we be strip-searched and forced to bend over to prove we don't have anything stuck up our bum? I won't wait for that.

Therefore, the next time I fly out of Chicago I will take a stand for myself and for everyone else who feels as uneasy about all of this as I do. I will fly out of O'Hare, but I will wear a one-piece bathing suit underneath my suit jacket and pants. I have to take the jacket off anyway, so all I have to do is let my pants drop quickly and I will be in my swim suit. Then, I will respectfully request that I be allowed to pass to my gate without being scanned or patted down as there will be no need. There will be nothing the TSA agents can't see with the naked eye that a scanner or a pat-down would find.

I swam competitively for many years when I was a kid, and I worked at a YMCA when my children were in school, teaching swimming. While my body isn't very toned anymore and I have a few fat rolls I can't seem to get rid of, I'm used to walking around in my bathing suit. It will cover me in a way in which I will I feel comfortable but will obviously show that I am not hiding anything. If security doesn't let me through, then I will let them throw me out. I won't make a scene, but I will make a statement. I choose neither.

I started a group on Facebook called; Wear Your Bathing Suit Through Security the Next Time You Fly. I have 16 members so far. Please join me and spread the word.

Dear Mr. President

My letter to President Obama, which I will mail to him today.  I will enclose the articles I have written so far about Paul, the issues on long-term care for people like Paul, and the Medicaid Institutes for Mental Diseases (IMD) Exclusion.


Dear Mr. President,

I admired your efforts yesterday to try and get some bipartisan discussion on how we can reform the health insurance system so it is affordable to the working class people, and so people can get affordable health care.  During the discussions you stated, “The people who are really left in the cold are working families who make too much for Medicaid and don't have anywhere to go. That's the group that right now is getting the worst deal. They're paying taxes, they're working, but they've got nowhere to go.”  You also stated, “the fact of the matter is, is that very poor people right now have coverage that is superior to what a lot of folks who make a little more money, are working very hard trying to support their families, do not.

Towards the end, you also said something that is similar to what I’ve been saying all along, which was, “And so we can debate whether or not we can afford to help them, but we shouldn't pretend somehow that they don't need help.”

You are absolutely correct in all of these statements, save for one issue, Mental Illness, which seems to be all but abandoned in the health care reform discussions.  The main issue I speak about is long-term care for people who are debilitated by severe mental illness.  They are the ones that continue to be “left out in the cold”, often quite literally; over a third of our homeless population, numbering in the hundreds of thousands, have a severe mental illness. 

Nothing in the health care reform bills that have been laid out before you so far will help people like my brother, Paul, who was pushed out the state hospital system, in which he was committed for over 20 years.  He was pushed into a community mental health system for which he was ill-equipped to handle. Many people who are like Paul don’t even recognize they are ill, which is required when receiving treatment on the “outside”.  We were told repeatedly that Paul needed to learn to live on his own while at the same time doctors were telling us Paul would never recover.  He never had a day without delusional thoughts for over 30 years. How he was expected to learn to live on his own is beyond comprehension. Paul proceeded to cycle in and out of psychotic states, requiring re-hospitalization, almost immediately. Yet we were told there was no going back; virtually no one has access to long-term care anymore, unless you are rich.

Now, we have gone back to criminalizing mental illness.  Prisons now act as de-facto psychiatric hospitals, with "patients" numbering far greater than any facility available to people in the community. Prisons often provide inadequate care – or none at all.  Some prisoners with severe mental illness not only don't get treatment, they are thrown into isolation for months, even years.  Paul was picked up by the police on a number of occasions.  Something could have happened during one of these incidents that could have landed him in jail, but luckily he was taken to the hospital each time. Others are not so lucky; they either hurt someone or are convicted on drug charges as many people with untreated mental illness use drugs to self medicate and have a dual diagnosis of mental illness and drug addiction.  I am thankful beyond compare that this was not Paul's fate, but it could have been, and it is for many, many people like him.

The mental health parity law, enacted in 2008, would not have helped Paul, and neither would the health care reforms that have been discussed to date.  Paul was a Medicaid patient, the same sort of person you say receive "coverage that is superior to what a lot of folks who make a little more money" have.  Obviously, you did not have people with mental illness in mind when you said that, or you are unaware of the situation.  Neither conclusion leaves me with any peace of mind that the treatment of people like Paul will get better any time soon.

There is only one solution to this problem and that is to end the 40-year old discriminatory practice of excluding patients in “Institutes for Mental Diseases” or “IMDs” from Medicaid coverage.  The Medicaid Institutes for Mental Diseases (IMD) Exclusion, enacted as a part of Medicaid at its inception, has provided the states with a financial incentive to deny care, not provide it.  This is, in my opinion, one of our country’s cruelest human rights violations because it was done in the name of civil liberties and during a call for more humane treatment for those “warehoused” in state hospitals.  Where are these former patients now?  They are in prison, homeless, or they languish in adult homes (a practice which the Supreme Court just declared unconstitutional).

We can debate how we can pay for the long-term care that people like my brother Paul need, but as you said, this does not mean they don’t need long-term care. Some people with severe brain disorders recover, some don't, just like any other illness. All I ask is that one criterion be used to discern whether or not someone is in need of long-term care, no matter what the illness is called or in which organ of the body it originates.  Medicaid eligibility should be determined by the individual's ability to pay, not where they are being treated.

I say we are already paying a high price for this social experiment gone bad through the increased burdens on the police, emergency rooms, local hospital psych wards, social service agencies, and our judicial system, not to mention people’s lives.  The states' budgets were balanced on the backs of people like my brother and the communities in which they live.

Paul died to save the state of New York some money, and the IMD Exclusion was responsible for creating the atmosphere in which it was allowed to happen.  His physical health suffered greatly after he was released from the state hospital.  After almost ten years, he was admitted to a nursing home as a Medicaid patient, due to his chronic lung disease.  Yes, nursing homes would accept him for his COPD, but not his mental illness, because if they did, they could be labeled an IMD and loose their Medicaid subsidies for all of their patients.  This is discrimination, pure and simple.  He died a year after he found his final "home".  He was only 48.

Please, repeal the IMD Exclusion as part of the health care reform package.  You have the power, right now, to change the course of treatment for the people, like Paul, who have no voice in this debate.

Mental Health Parity Law Allows Discrimination to Continue

How's that for a newspaper headline?  I had to come up with something that would sound like it could be one of those headlines that scrolls across MSNBC or one of those other headline news organizations.  The truth of the statement, however, is undeniable. 

Once again, I regale my readers with the horrors of the community mental health system as experienced by the people who need treatment the most.  I try to say the same thing in different ways in order to keep people's attention and perhaps gain new supporters. Unfortunately, I'll have to keep doing this until enough people listen and we see real change.  Man, I wish that word wasn't cheapened by election politics.

Below is a link to an article that I published in the Op-Ed News website.  Please share this with everyone on your vast social networks.  If more people speak out about this - especially if they contact their US and State Representatives, perhaps we can get the IMD Exclusion repealed.  What's that you say?  Well, read on...

Mental Health Parity Law Allows Discrimination To Continue

She's a Palm Reader - Sung to Hall & Oates Maneater

She'll only speak for cash
The mean and greedy witch
Nothing is new, I've seen that kind before
Watching and reading
Ooh, she's speakin to you but her eyes are on her palm

So many came to see
What they thought they were gettin' for tea
The woman is wily, a she-dog tamed by the purr of a Snow Cat
Money's the matter
If you're in it for speeches, you ain't gonna get too far
  (Oh-oh, here she comes)  Watch out now she'll check her hand
  (Oh-oh, here she comes)  She's a palm reader
  (Oh-oh, here she comes)  Watch out now she'll check her hand
  (Oh-oh, here she comes)  She's a palm reader

I wouldn't if I were you
I know what she can do
She's deadly man, she could really rip our world apart
Money’s the matter
Ooh, the beauty is there but a beast is in the heart
  (Oh-oh, here she comes)  Watch out now she'll check her hand
  (Oh-oh, here she comes)  She's a palm reader
  (Oh-oh, here she comes)  Watch out now she'll check her hand
  (Oh-oh, here she comes)  She's a palm reader

------ saxophone ------

  Ooh,
  (Oh-oh, here she comes)  Here she comes, Watch out now she'll check her hand
  (Whoa-oh, here she comes. Watch out)   She's a palm reader
  (Oh-oh, here she comes. She's a palm reader)   Ooh, she'll check her hand
  (Oh-oh, here she comes)  Here she comes, she's a palm reader
  (Oh-oh, here she comes. Watch out)  She'll only come out at night, ooh
  (Oh-oh, here she comes)  Here she comes, she's a palm reader
  (Oh-oh, here she comes. She's a palm reader)  The woman is wily, woo
  (Oh-oh, here she comes)  Here she comes.  Watch out now, watch out now
  (Oh-oh, here she comes)  Oh, watch out, watch out, watch out, watch out
  (Oh-oh, here she comes)  Yeah, yeah, she's a palm reader
  (Oh-oh, here she comes. She's a palm reader)  She's watching and reading,
ooh
  (Oh-oh, here she comes)  Oh, she's a palm reader

My Kind of Motivation

One of my daily activities these days is to roam the web, looking for references to mental illness.  If I come across something that illustrates the writers' ignorance of the issues, I try to enlighten them.  I try to be polite and informative.

Today, I ran across an article about a woman who killed her 8-yr old boy who was autistic.  She was labeled a "socialite" in the title, which con-notates a rich woman who has nothing better to do than go to parties.  She had previously claimed the boy had been abused by a cult.  There wasn't a lot of additional information about the murder, but her ex-husband called her a devoted mother and was shocked by the news.

To me, a woman who kills her own 8-yr old son, a boy with disabilities, must have had some psychological issues.  I mean, who in their right mind would do that, right?  Without knowing anything else, I think most people would come to that conclusion.  Think of Andrea Yates.  She was in a state of psychosis when she killed her children.

The first comment I read was, "Socialite = trash with money." I replied with "The woman obviously had psychological issues. She should receive treatment, not ridicule. The whole cult thing was a warning that was ignored."  Someone else replied to my comment with, "while i disregard what the OP said......this woman murdered her son....while she certainly needs treatment, a little ridicule is certainly in line as well".  To which I replied,  

"If you ever had a family member with a severe mental illness who hurt someone - you would not say that. This is certainly not a time for ridicule. There is nothing funny about this. Yes, she murdered her son. A mother who murders her little boy, who had claimed that he had been controlled by a cult, is obviously not well. Just because she was rich does not mean she can't have the same problems as people like my brother, Paul, who had schizophrenia.

He pulled a knife on us once. If he had killed me, would you have ridiculed him too? But then again, it wouldn't have gotten in the news because I am not famous or rich.

Your ignorance is showing."

Another person wrote this comment, , "Give the wench the chair.'  So now the "socialite" is a "wench".

I created my own original comment, which read,

"Posters like C and A come here to show off that they can make cute, sarcastic remarks that does nothing to forward any really discussion on the issue. Without thinking they assume that someone who is rich is obviously trash. Without thinking, someone who is obviously in need of psychiatric help is called a "wench".

She is someone's daughter. She needs treatment, not ridicule.

Yes, she did a horrible, horrible, thing, but someone who can kill their own little boy is obviously not well.  That she is now subject to these childish remarks shows how low this society has sunk."

One person wrote a very thoughtful comment, thanking me for my attempts to enlighten these fools.  The person who wrote the original remark about the socialite being trash replied, "cry me a river". She later went to another article where about someone who beat his wife and replied to one of my comments with, "maybe he was 'mentally ill'." She was trying to egg me into an argument, I think.  I ignored it.

Yup, that's what she wrote.  I am assuming the person is a woman based on her screen name, but it could be a man, I don't know.  In any case, not only is his/her ignorance showing, her utter lack of common decency and empathy is actually a little scary.

But this motivates me more than anything.  I guess I am the kind of person that needs to be pissed off to keep going.  So, I thank her/him for it.  I will save the comments and revisit them.  They will help feed my motivation when it gets low.

Notes on Your Hand - A Ballad to Sarah Palin

Notes On Your Hand 
- A Ballad to Sarah Palin - to the tune of "Pants On The Ground"
by Ilene Flannery Wells


Notes on your hand
Notes on your hand
Lookin' like a fool with your Notes on your hand


With the bumpit in your hair
Your smirk on your face
Lookin' like a fool with your notes on your hand

Call yourself a patriot
Lookin' like a fool
Answerin' the questions with your notes on your hand


Bump it up, hey!
Get your notes off your hand
Lookin' like a fool
Walkin', talkin', with your notes on your hand

Bump it up, hey!
Get your notes off your hand
Lookin' like a fool with your Notes on your hand

Make Kendra's Law Permanent

The following is a letter to the editor I wrote to the Times-Union newspaper in Albany, in support of making Kenra's Law permanent in New York.  This was in response to an editorial by DJ Jaffe, co-founder of the Treatment Advocacy center.

To The Editor,

I would like to echo Mr. Jaffe's and the Treatment Advocacy Center's opinion that Kendra's Law be made permanent.  Many of whom I call the "sickest of the sick",  those with the severest forms of serious brain disorders, like Schizophrenia and Bipolar Disorder, lack the insight they need to even comprehend they are sick, let alone seek treatment.  

Some, left untreated, are at risk of committing violence to themselves or to others. Kendra’s Law provides their loved ones, and the community in which they live, a mechanism to get these individuals into treatment before that happens, not after. 

We “freed” hundreds of thousands of patients from the state hospitals, labeled “snake-pits”, but where are they now?  We traded one “snake-pit” for three others. They account for a third of the homeless population and crowd our prisons.  They languish in adult homes that have all the bad connotations of state hospitals with very few of the benefits; this was my brother Paul’s fate.

The idea that Paul was one of the lucky ones, that he was never homeless or incarcerated, is a sad testament to the state of affairs in which we find our selves. 

This problem was of our own making.  It’s time we correct it.  It’s time we step up and say we are committed to swinging the pendulum back so the sickest of the sick get the treatment they need.  The first step is to make Kendra’s Law permanent. 

Domestic Violence: My Second Cause

All of you who know me, know that I am dedicating my life to helping people like my brother Paul, who have severe mental illness.  I even started a cause on Facebook called Paul's Legacy Foundation to help raise awareness on the issues facing the sickest of the sick, those who should be in long-term care but are on the streets or in jail.  However, if the sky were to part and all were made right within the brain, curing mental illness, I wouldn't just retire.  Domestic Violence is another issue that hits close to home with me.

The first boyfriend I had after moving away from home was very controlling, to the point where he didn't want me to go to college for fear I'd meet someone else.  While that didn't stop me, going out on my own with my new college friends ignited arguments about who I'd be with and accusations of infidelity.  I shared an apartment with my sister, but practically lived with him in his tiny campus apartment (he was a grad student). He refused my one request to stay with me the first night my sister and I moved into our new rental house.  That was the night someone broke into my room and tried to rape me.

Why I didn't leave him right then and there, I'll never know.  Conflict avoidance had always been an issue with me, until recently, if you can believe that (I know I put on a big front, don't I?).  My sister Grace and a friend of hers finally took me out to lunch and lifted the veil of confusion I had between love and control.  He didn't love me, he loved to control me.  When he couldn't control me, he punished me with verbal abuse, fists at the ready. He came very close to hitting me once, punching the wall instead. I helped him repair the hole he made. The night I was attacked he punished me by his absence, which proved to be more injurious that any slap in the face or punch in the stomach ever could.

The day I finally told him that I was breaking up with him he reared his fist back, but I planted my feet and looked him straight in the eyes; his fist hit the wall next to my face.  He told me that no one would love me like he did.  I was very thankful for that bit of wisdom, because I didn't want to go through that again.  When that door closed behind me, I had the biggest smile on my face and I walked down the street with a spring in my step. I have never let anyone else, man or woman, have that kind of hold on me again. 

My problems with that boyfriend pale in comparison to some of the horror stories I have heard, and supported by the bruised faces of the women I've met.  I was associated with a shelter for victims of domestic violence (who helped men too) for over 10 years when I lived in Wisconsin, first as an Administrative Assistant and then as a volunteer.  I picked up women who had their belongings in garbage bags, or nothing but the clothes on her back.  I took women to their house, with a sheriff in tow, to get their things and brought them back to the shelter until they found their own place.  I picked up donations from rich women who still didn't think that domestic violence could happen to them, but it does. 

Domestic abuse has no socio-economic boundaries. It affects all walks of life, but money can be a factor. This morning I read an article about how, in these economic times, incidents of domestic violence are on a sharp rise.  The stresses the economy is putting on relationships brings out the worst in some people, unfortunately, or makes it difficult for women and men to leave their abusers.  Please do what you can to support the crisis centers and shelters in your area.

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.

Sincerely,

Ilene Flannery Wells

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!

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.

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.

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.

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" <ilenewells@gmail.com> 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.

Would you assist me?

Sincerely,

Ilene Flannery Wells


http://mcclucker.blogspot.com/2009/12/tall-paul.html
http://mcclucker.blogspot.com/2009/11/end-discrimination-toward-severely.html

---------- 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 <ilenewells@gmail.com>
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.

Thanks!

Ilene

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.

Tall Paul

This personal account will be published in a Psychiatric trade journal in the near future. It is a version of Paul's story that I have been telling for over a year - to anyone that will listen. I sent my "Health Care Reform Letter" to the editor of this journal, in response to an article I found on-line from several years ago about long-term care for the severely mentally ill. They responded back, asking me to contribute to their "Personal Accounts" section - but they wanted more of how Paul's treatment made us, his family, feel. They wanted more of me in it. Then they asked me to keep it to 1600 words! Ack!

Note: I used a few lines from some pieces my sister, Katherine Dering, wrote about Paul. I knew she had written some good stuff and since they wanted to know about his family's feelings, I thought using something that another family member already wrote would be useful. Thank you Katherine! I asked them to include your name as a contributor.
+++++++++++++++++++++++++++++++++++++++++++++++
Tall Paul

Tall Paul
Tall Paul
Tall Paul
He’s my all

A little ditty we used to sing to my brother Paul when we were little…

My twin brother Paul was among the thousands of patients who were released from the New York state hospital system. While the gesture is a noble one, that everyone has a right to live with other members of society, there is a segment of the mentally ill population that should never be expected to be able to live on their own and who need constant supervision. Paul was one of them.

Paul’s first major psychotic episode was at the age of 16. After a three day observation he was admitted to a private hospital, diagnosed with schizophrenia. A year later, my parent’s insurance “maxed” out and they were advised to commit him; it was the only option that would ensure they could financially take care of their nine other children. Paul never left the state hospital system, except for short visits home or day outings, until the hospital closings caught up with him in 1998, 22 years later.

Paul was extremely resistant to any type of drug, behavioral or cognitive therapy. While he mellowed over the years, never a day went by without him talking of something that never happened, like being killed by one of his best friends, making millions as a Kung Fu star in Korea, or having 200 children born from his teeth.

He did have some lucid moments. He could ask after my sons and he loved to show me all of the pictures of his nieces and nephews in his wallet. He knew who everyone was, and could follow along with the happenings of our family members over the years. But his conversations were always interwoven with a medley of delusions. Always.

My family agonized over Paul’s initial commitment. Paul was my twin. How could I be happy when he was in “there” and I was living a so-called normal life? But I “went on” with my life, as I was told. I moved away, met my husband; I even had my own set of twins, which was a blessing and a curse. It was a constant reminder of the twin life I had lost.

Early on, his delusional ranting sometimes ruined holiday gatherings; upsetting more than the children. We loved Paul, but we were relieved to take him back to the hospital at the end of some visits. Visits usually ended in a pool of tears. As much as my parents, my siblings and I suffered from sadness, guilt and loss, we knew Paul could not live at home with us. Paul was very sick. We could not manage his 200 lb frame which still showed signs of the former football player he was.

As time wore on, we realized Paul would never get better. I also realized I did not “do it” to him. My parents didn’t “do it” to him. The drugs (PCP, Acid – anything he could get his hands on) probably triggered it and made it much worse. I tried to forgive myself for sometimes being happy. I cried less often and sent him cards and gifts on his birthday. I talked to him on the phone and visited with him when I was home. I sought help sporadically for my “chronic, low-grade, depression”.

Paul and the other patients displaced from the hospital closings were on only one track – to live independently. He was put into a transitional group home on the hospital grounds, then moved to another transitional group home within an “assisted” living complex, and then finally to his own apartment within the “assisted” living complex. He took cooking and other “life skills” classes.

At first I was overjoyed. He was finally out from behind locked doors and barred windows. I think about it now and marvel at how naive I was to think Paul was still going to be “taken care of”. We eventually learned that the assistance provided required that Paul ask for help, something he lacked the insight to do.

About a year after he started his new, independent, life, my sister Katherine visited and noticed Paul looked skinny. She hadn’t seen him in a few weeks. She eventually learned that his food stamps card didn’t work anymore. She found out he had been knocking on doors, begging for cigarettes and food. Another time, he was picked up by police because he was “menacing” people on the street, yelling at them, claiming they stole his liver. The police took him straight to the hospital.

After the food stamps incident, my sister Katherine met with Paul’s case workers and doctors. They were still talking about moving him to an even less supervised environment. It was mind numbingly absurd. In one breath the doctor acknowledged that Paul was so drug resistant that he would never get better. In the next, the social worker said that Paul was required to ask for help to fill out his food stamps renewal form, not the other way around. Were these people even in the same room with each other? They had no idea Paul had so little food. And now they were telling my sister that Paul would be transitioned to an even less restrictive studio apartment.

Katherine remarked, “Stray dogs are treated more humanely than the mentally ill in this state.” She thought he would die if they went through with it. They didn’t get a chance.

Paul’s condition deteriorated to the point that he was sent back to the state hospital. During this admission, we found out (again after the fact) he had "volunteered" for a drug study program. He was put in a special unit where they could monitor any side effects and took blood everyday to check on how much of the drug remained in his blood stream. He was a human guinea pig!

After he was released from the state hospital – again – he was placed in a 200 hundred bed facility called an adult home. Everyone there seemed mentally ill. They would mill around the halls and outside, smoking, or wandered the streets. There were no planned activities. You couldn’t give my brother anything of value as it would get "lost" or he would give it away, being generous or trading for cigarettes. There were times we had to ask the staff to clean his room because it smelled really bad. There were times when I visited him and other people were sleeping in his roommate’s bed. One of them, a woman, had a habit of wetting the bed. Paul again cycled in and out of the local hospital psych wards and the state hospital.

How could anyone think this life of Paul’s was better than when he was in the state hospital? During his last stay in the state hospital we practically begged them to keep Paul. We were told this was not possible.

During the 10 years after his initial release in 1998, Paul’s physical condition suffered as much as his mental one. He looked old beyond his years. The agony that my siblings and I went through during this period of Paul’s life far exceeded the agony we felt when he was committed. Ironically, we became friends with the new, mellower Paul. We loved the New Paul, just as much or more than we loved the Old Paul, our Tall Paul. While he was still very delusional, he didn’t lash out at us as much and would cooperate in his treatment. However, and this is important, this cannot be mistaken for Paul being able to live with us or his being able to live on his own.

A few years ago, I convinced my husband to move from WI to NY so I could be near Paul after nearly 30 years. I became number one on the list at the adult home to call if anything happened to him. I saw him almost every weekend. I took him bowling and to the movies. He would introduce me as his twin sister. I felt somewhat whole again.

Within six months after my move back to NY, he had two severe bouts of pneumonia resulting in hospitalizations. We found a nursing home that would accept patients like Paul (i.e. mentally ill). The idea was to give him more time to recuperate, without smoking. However, due to Paul’s chronic lung disease, a commonality among the severely mentally ill, the nursing home decided they could keep him permanently.

The nursing home staff had taken a liking to him. His nickname was “The Governor” because he said hello to everyone and shook their hands. They put him on the patch and we thought maybe, he would be OK. Just weeks after we got the good news that he had a new home, he was diagnosed with lung cancer. He passed away nine months later.

I am heartsick when I think about the life Paul lived. I get angry when I think that the last 10 years could have been prevented. I hate myself for buying him cigarettes. I love my siblings even more for coming together as a family during the chemo and radiation treatments. If nothing else, Paul’s purpose in life was to teach us the true meaning of family. It is both humbling and uplifting. My grief is still raw, but I know it will subside. I am not so sure about my anger.

The point of all of this, my telling Paul’s story, is to illustrate what one former patient’s life was like after the state hospital closings. After Paul’s roller-coaster ride of recurring psychotic episodes, trips to the local hospital psych ward, stays back at the state hospital and then back to the adult homes, it is clear to me he would have been much better off if he had stayed in a real hospital setting, or at least in a permanent group home, where he would have been more closely supervised. If we are to reform the health care system, we need to take this into account.