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.