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.