Sunday, January 17, 2010

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" <> 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.

---------- 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 <>
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.



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