The Lives They Left Behind Suitcases From A State Hospital Attic offered a ray of hope for people like me, who had discovered that an ancestor was a former patient who died at Willard State Hospital. I read the book in a day, not being able to put it down. I wanted to know more. I wondered what kind of treatment was given to my great-grandmother, and I wonder to this day. The significance of this book is that no others before Darby Penney and Peter Stastny had ever gone through the patient medical records and personal belongings in order to tell the patient’s side of the story. To learn more, please feel free to download, read, and share “Lost Luggage, Recovered Lives” by Peter Stastny, MD, and Darby Penney, MLS.  

Darby Penney is a leader in the human rights movement for people with psychiatric disabilities. Peter Stastny is a psychiatrist and documentary filmmaker. You may contact Ms. Penney to inquire about your ancestor’s suitcase at: community@capital.net. For more information visit The Lives They Left Behind Suitcases From A State Hospital Attic Website. 

The Lives They Left Behind by Darby Penney & Peter Stastny

Within the pages of this book is where I first learned about the anonymous graves at Willard State Hospital Cemetery. Further research led me to the discovery that burying former patients of New York State Hospitals and Custodial Institutions, in numbered, anonymous graves, was not the exception but the rule. As I have stated before, I am a Genealogy Geek who was inspired by Ms. Penney and her book, to get a law passed that will require the NYS Office of Mental Health to release the names; dates of birth and death; and the location of these historic graves, to the public so that these people may be honored and remembered with dignity. Even with the new HIPAA ruling that allows the release of medical records after 50 years from the time of the patient’s death, it appears that the OMH will not comply with the new ruling unless forced to do so. One wonders how and where they got the authority to classify the burial ledgers (cemetery records) in the same category as medical records? Why are the deaths of thousands of people being kept a secret?

Hopefully, the NYSOMH will release historic patient burial information and when they do, it will be a wonderful opportunity to educate the public about what mental illness is; to reassure people that they should not be ashamed; that help is available; and that no one needs to struggle alone. But as of today, they are sticking with “the very fact of one’s mental illness, and receiving professional help for such illness, can, if generally revealed, cause a person to be subjected to prejudice and stigma in one’s personal and professional life.” Does this statement really encourage people to seek help?

“The only exception would be if you believe a patient was buried in one of our cemeteries. If so, then with appropriate family linkage documentation, including birth and death certificates, we could provide you with information on the individual’s burial site.”

One of the first lessons that you learn when researching your family history is that people have common names. In other words, you are not the only person in the world who has your name. Lesson two is, anyone can claim to be anyone’s descendant in order to get a historic copy of a birth, marriage, or death certificate. The state does not know your genealogy, nor do they care because they’re making money on the deal. Note that after spending the money on this documentation, writing a letter, mailing it in, and waiting months for a response from the OMH, they state we could, instead of, we will, provide you with the information.

The following “Frequently Asked Questions” page is posted at NYS Office of Mental Health Last Modified: 11/15/2012.

“Q. Can I get a copy of a birth or death certificate for a family member that was a resident of one of the Office of Mental Health’s facilities?

A. Birth records, death records, and marriage records are considered Vital Records in New York State and generally can be accessed by the public. If you are interested in exploring this option, you can obtain more information on how to obtain these records on the New York State Department of Health’s vital Records website at www.nyhealth.gov

Q. I have been doing genealogy research and have discovered that one of my relatives was a resident at one of the Office of Mental Health facilities. I would like to find out any personal or medical information about them. Can I obtain a copy of these records?

A. The Office of Mental Health is dedicated to the maintenance of privacy and confidentiality of patient information. We feel this is especially true with regard to mental health treatment records. It has long been recognized that the very fact of one’s mental illness, and receiving professional help for such illness, can, if generally revealed, cause a person to be subjected to prejudice and stigma in one’s personal and professional life. We also recognize that effective and lasting psychiatric therapy can take place only in an environment of privacy and trust in which the patient knows that his/her statements will be held in confidence.

New federal regulations that govern the privacy of individually identifying health information, have underscored this requirement. While it has always been our position that a person’s right to confidentiality of clinical information does not change upon his or her death, federal regulations have given us some additional specific guidance on access to records of deceased patients. Therefore, we have recently modified our policy and procedures and require the following before we can provide any information from a deceased patient’s clinical record:

A. Birth records, death records, and marriage records are considered Vital Records in New York State and generally can be accessed by the public. If you are interested in exploring this option, you can obtain more information on how to obtain these records on the New York State Department of Health’s vital Records website at www.nyhealth.gov

B. If you are a family member of the deceased patient and the patient allowed our facility to share information with you while he or she was living, and it is reasonable to assume that the patient did not intend to revoke his or her permission to continue to communicate with you prior to his or her death, we may provide you with basic information about the patient’s condition and circumstances of his or her death, if appropriate.

C. If you are a family member of the deceased patient and the information from the patient’s record is relevant to your own health care, we can release the information to your physician, provided the physician submits a written request to us on your behalf.

D. If you are the executor of the deceased patient’s estate, or if you otherwise have legal authority to act on behalf of the patient or his/her estate, (e.g. you have letters testamentary issued by a court), we can release information to you upon your written request which documents and attests to your legal authority to act on behalf of the deceased patient. We can also release information to you if you obtain and provide us with the written consent from the executor or legal representative of the deceased patient.

E. In all of these cases, we are required to review the record prior to its release to ensure it does not infringe upon the privacy rights of any other individual who may be named in the record.

The only exception would be if you believe a patient was buried in one of our cemeteries. If so, then with appropriate family linkage documentation, including birth and death certificates, we could provide you with information on the individual’s burial site. Requests should be sent to John Allen, Consumer Affairs, NYS Office of Mental Health, 44 Holland Avenue, Albany, NY 12229.”