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!

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.

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.