Saturday, March 27, 2010

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.

Wednesday, March 17, 2010

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.