“Breakthrough For Medical Genealogy” by Judy G. Russell – HIPAA 2013

Great article by Judy G. Russell, re-posted with permission. I have contacted the New York State Office of Mental Health asking their position on this new ruling. Hopefully, they will respond soon.

Breakthrough For Medical Genealogy

Posted on April 8, 2013 by Judy G. Russell One For Our Side

There’s been a major breakthrough in records access for those of us with family medical issues that we research in part through our genealogy.

Quietly, without much fanfare, the federal Department of Health and Human Services (HHS) has finally come around to understanding that closing medical records forever, even after the death of the person treated, isn’t the way to go.

It adopted a new set of rules earlier this year, effective just two weeks ago, that opens medical records 50 years after the patient’s death.

The change — first proposed nearly three years ago1 — came in an omnibus Final Rule adoption governing a vast array of issues under the federal Health Insurance Portability and Accountability Act (HIPAA) designed primarily to update personal privacy rules in light of technological changes in medical recordkeeping.2 The rule was adopted in January and became effective on March 26th.

As far back as 2003, archivists had complained to HHS about the old rule, under which personal health information was to be protected forever and only disclosed even after the patient’s death only if the legal representative of the estate authorized it.

In 2005, Stephen E. Novak of Columbia University had quoted from those earlier complaints in an HHS conference, explaining that “certain historical, biographical and genealogical works where the identity of the individual is the whole point could not be written, such as the Pulitzer Prize-winning A Midwife’s Tale, based on the late 18th and early 19th century diary of Maine midwife Martha Ballard.”3

Nancy McCall of the Johns Hopkins Medical Institutions told that same conference that “a number of state archives have acquired the records of defunct hospitals in their states and do not know whether they are covered entities. This is especially important for mental hospitals and TB hospitals that have closed.”4

All of those participating pleaded for clarity — and for access.

The new rule is, finally, the HHS response.

In its rulemaking, HHS recognized the problems inherent in “the lack of access to ancient or old records of historical value held by covered entities, even when there are likely few surviving individuals concerned with the privacy of such information. Archives and libraries may hold medical records, as well as correspondence files, physician diaries and casebooks, and photograph collections containing fragments of identifiable health information, that are centuries old. Currently, to the extent such information is maintained by a covered entity, it is subject to the Privacy Rule.”5

It noted that the “majority of public comment on this proposal was in favor of limiting the period of protection for decedent health information to 50 years past the date of death. Some of these commenters specifically cited the potential benefits to research. A few commenters stated that the 50-year period was too long and should be shortened to, for example, 25 years.”6

Based on its review and the public comments, HHS concluded:

We believe 50 years is an appropriate period of protection for decedent health information, taking into account the remaining privacy interests of living individuals after the span of approximately two generations have passed, and the difficulty of obtaining authorizations from a personal representative of a decedent as the same amount of time passes. For the same reason, we decline to shorten the period of protection as suggested by some commenters or to adopt a 100-year period of protection for decedent information.7

So, as of the 26th of March, HIPAA’s definition of “protected health information” expressly excludes information regarding “a person who has been deceased for more than 50 years,”8 and covered entities need only comply with HIPAA “with respect to the protected health information of a deceased individual for a period of 50 years following the death of the individual.”9

Now the fact that the federal government isn’t standing in the way doesn’t mean that all of us with family health issues can rush out and expect to be given immediate access to those old health records that may tell us so much about things we face today. The feds have never been the only player in the privacy game — state laws may also restrict access to health information.

But it’s a major breakthrough to have the federal government finally move out of the way of access to records of critical importance.


Tip of the hat to Ron Tschippert for alerting The Legal Genealogist to the rule adoption!

  1. Notice of proposed rulemaking, 75 Fed. Reg. 40868, 40874 (14 Jul 2010). 
  2. See “Modifications to the HIPAA Privacy, Security, Enforcement, and Breach Notification Rules Under the Health Information Technology for Economic and Clinical Health Act and the Genetic Information Nondiscrimination Act; Other Modifications to the HIPAA Rules,” 78 Fed. Reg. 5565 (25 Jan 2013), PDF version, U.S. Government Printing Office (http://www.gpo.gov/fdsys/ : accessed 7 Apr 2013). 
  3. Minutes, 11-12 January 2005, Subcommittee on Privacy and Confidentiality, National Committee on Vital and Health Statistics, HHS.gov (http://ncvhs.hhs.gov/ : accessed 7 Apr 2013). 
  4. Ibid. 
  5. “Modifications to the HIPAA … Rules,” 78 Fed. Reg. 5613-5614. 
  6. Ibid., 78 Fed. Reg. 5614. 
  7. Ibid. 
  8. 45 CFR §160.103. 
  9. 45 CFR §164.502(f). 

Giving Names To Numbers – Central Louisiana State Hospital Cemetery

Giving Names to Numbers.

Central Louisiana State Hospital Cemetery Project

Central Louisiana State Hospital Cemetery Project

Here is another example of a group, Committee for the Preservation and Enhancement of Central Louisiana State Hospital Cemetery, that wants to memorialize the people who lived and died at CLSH and were buried in anonymous, numbered graves. Because of the HIPAA Law, they are not allowed to release any of the names, but are allowed to put them on a memorial. If a family member wants to know if their loved one is buried there, they can only confirm or deny. They are prohibited in stating that these people were patients.


To bring back the dignity of the almost 3000 souls buried on the Central Louisiana State Hospital Grounds.

Company Overview

A group of people brought together by Mr. Ray Moreau who are dedicated to preserving the cemetery on the grounds of Central Louisiana State Hospital.


The committee’s goal is to place a memorial with the names of each of the almost 3000 souls bured at the Central Louisiana State Hospital Cemetery, to have the cemetery recognized as a dedicated cemetery and establish a perpetual fund for the ongoing care of the cemetery in the future.

General Information

Donations to preserve the Central Louisiana State Hospital Cemetery can be sent to:

The Extra Mile
PO Box 3178
Pineville, LA  71361-3178
Call 318-484-6575 for more information.


The Iron Coffin – Eastern State Hospital Cemetery

Phil Tkacz, President of the Eastern State Hospital Cemetery Preservation Project in Lexington, Fayette County, Kentucky, is confronting the same problems with the federal HIPAA Law that many other concerned groups in the United States are dealing with concerning identification of deceased patients of former State Hospitals (Insane Asylums) and Custodial Institutions. What I find incredible is that many states will now be able to access LIVING INDIVIDUAL’S medical records (profiling) in order to comply with the new gun control legislation but the identities of patients who have been dead for over a century cannot be revealed because they lived with a mental illness, epilepsy, or developmental disability. When these folks were buried in the nineteenth century, the states and counties would not provide the money for headstones and instead marked their graves with numbers. In many cases, the cemeteries have been lost with the passage of time or we discover that the cemeteries and the graves themselves were never marked or recorded. The states spent huge amounts of tax payer dollars supporting and caring for these people while they were alive. In the nineteenth century, government agencies actually had budgets. It would have been considered an extravagance for the states and counties to also provide engraved headstones as this dependent group of human beings were considered to be the dregs of society. My question is, why is this particular group of people still being punished for illnesses over which they had no control? When will someone who knows what they are talking about at the Department of Health and Human Services come forward and explain why these people cannot be honored or remembered with dignity? And, why is this group of people being given more privacy protection than the living? Why?



Phil’s note along with photographs, concerns an iron coffin believed to be from the 1840s that is engraved with a name. The name cannot be revealed because of the HIPAA Law. Why would a family take the time to engrave their loved one’s coffin if they didn’t want anyone to know who that person was? What about the unfortunate individuals who were buried in thin, wooden coffins or just tossed in the dirt wrapped in a shroud? Why can’t we know who they were? Why can’t we have access to their medical records? THEY ARE DEAD AND HAVE BEEN DEAD FOR OVER A CENTURY. The federal government has no problem releasing our medical records, sending them over the internet, and allowing physicians to take home flash drives containing patient information that can be easily accessed or lost. So, what’s the problem? As citizens, we don’t know who is looking into our medical histories or why. This whole issue is ridiculous and the HIPAA Law is a joke! HHS is solely responsible for this fiasco and the stigma that they are perpetuating because no one knows how to interpret the damn law!



“In 2008 the state announced it would convert the Eastern State Hospital into a community college, BCTCS. At the same time, ESH would move to a new facility. Our group began meeting with all involved in order to discuss what would be done when graves were to be found on the hospital property as construction progressed. University of Kentucky Archeology attempted to do a survey of as many areas as possible to find possible graves, but found none. In January of 2011, I received a call from the state, they said 30-50 graves had been found in an area close to the entrance off Newtown Road & University of Kentucky was going to start exhuming the remains soon. Work progressed slowly due to weather, but was finished by late April 2011.

We met with the state, University of Kentucky Archeology, and others, to discuss what they had found later in 2011. The summary was, the actual number was about 170 remains of former patients had been found and that there were more in the same area but there wasn’t enough money to continue into that area. It was decided by them, that they would exhume those remains when construction got to that area. The timeline for re-burial was about 1 year and we would be kept up to date when necessary.

Fast forward to January 2012. I was told by a reliable source that there was an Iron coffin found the year before and there were photos. Also the coffin has a plaque on it with a name, unfortunately the last name is unreadable in the photo. I contacted the person we had been talking to for updates and asked why this was never mentioned to us. We were told that they kept it from the media to “preserve the dignity of the person in the coffin and to protect their privacy.” Why our group was not told was never explained though. Even the University of Kentucky said they could not release the name.

Attempts were made to have the name released but to this day we are told that the name is protected by HIPAA. A request was made to have a headstone erected over the grave where this coffin will be re-interred later this year and were told, again, that it wouldn’t be legal under HIPAA. We are still trying to find a way to have the name released, our main argument is that A) Patient privacy does not apply, and B) Common sense would tell you that having the name put on the coffin was done in case this happened and it was later exhumed.”



S2514-2013 – NY Senate Open Legislation – Relates to patients interred at state mental health hospital cemeteries – New York State Senate

S2514-2013 – NY Senate Open Legislation – Relates to patients interred at state mental health hospital cemeteries – New York State Senate.


Well, the bill has a new number but it’s not dead! Yay! Special thanks to Senator Joseph Robach and Tim Ragazzo!

On March 1, 2013, Tim Ragazzo, Director of Operations & Legislation from Senator Joe Robach‘s office, called me to let me know that the bill was re-introduced (with a new number), to the NYS Senate and has been referred to the finance committee. This is great news because it means the bill is not dead! Now it has to pass in the Assembly. Hopefully, the bill will become law before it expires at the end of 2014.
-L.S. Stuhler at lsstuhler@gmail.com

Willard Cemetery Disk by Roger Luther at nysAsylum.com

Willard Cemetery Disk by Roger Luther at nysAsylum.com


Willard Cemetery 2 by Roger Luther at nysAsylum.com

Willard Cemetery 2 by Roger Luther at nysAsylum.com

For more information about these long-closed New York State Hospitals, check out the “Interesting Articles & Documents” page.


By 1901, there were thirteen state hospitals for the insane in the State of New York. All these hospitals buried their dead in anonymous, unmarked graves. Some had their own cemetery like Willard State Hospital; others used city and county cemeteries like Rochester State Hospital. Most of these state hospital cemeteries are unmarked, unkempt, and forgotten. None of the thousands of former psychiatric patients’ names have been released to the public. Considering that in 1870, the first patient was buried in the Willard Cemetery, which in the year 2012 covers a span of five or six generations, these people have waited long enough to be remembered. When you release the names, you remove the stigma. The following is a list of most of these long-closed state hospitals; there are more.

1. Utica State Hospital – Counties of Fulton, Hamilton, Herkimer, Montgomery, Oneida, Saratoga, Schenectady and Warren.

2. Hudson River State Hospital – Counties of Albany, Columbia, Dutchess, Greene, Putnam, Richmond, Rensselaer, Washington and Westchester.

3. Middletown State Hospital – Counties of Orange, Rockland, Sullivan and Ulster.

4. Buffalo State Hospital – Counties of Erie and Niagara.

5. Willard State Hospital – Counties of Allegany, Cayuga, Genesee, Ontario, Orleans, Schuyler, Seneca, Steuben, Tompkins, Wayne and Yates.

6. Binghamton State Hospital – Counties of Broome, Chemung, Chenango, Cortland, Delaware, Madison, Otsego, Schoharie and Tioga.

7. St. Lawrence State Hospital – Counties of Clinton, Essex, Franklin, Jefferson, Lewis, Onondaga,Oswego and St. Lawrence.

8. Rochester State Hospital – Counties of Monroe and Livingston.

9, 10. Long Island State Hospital – (Kings Park and Flatbush, Brooklyn) – Counties of Kings, Queens, Nassau and Suffolk.

11, 12. Manhattan State Hospital – (Manhattan and Central Islip) – Counties of New York and Richmond.

13. Gowanda State Homoeopathic Hospital (Collin’s Farm) – Counties of Cattaraugus, Chautauqua and Wyoming.

Additional State Hospitals:

14. Pilgrim State Hospital – Brentwood, Suffolk County, New York

15. Mohansic State Hospital – Yorktown, Westchester County, New York

State Hospitals for the Criminally Insane:

16, 17. Mattaewan and Dannemora State Hospitals


January 2013 HIPAA Privacy Regulations: General Rules for Uses and Disclosures of Protected Health Information: Deceased Individuals – § 164.502f

“HHS Regulations as Amended January 2013
General Rules for Uses and Disclosures of Protected Health Information: Deceased Individuals – § 164.502(f)

Standard: deceased individuals. A covered entity must comply with the requirements of this subpart with respect to the protected health information of a deceased individual for a period of 50 years following the death of the individual.

HHS Description and Commentary From the January 2013 Amendments
General Rules for Uses and Disclosures of Protected Health Information: Deceased Individuals.


Section 164.502(f) requires covered entities to protect the privacy of a decedent’s protected health information generally in the same manner and to the same extent that is required for the protected health information of living individuals. Thus, if an authorization is required for a particular use or disclosure of protected health information, a covered entity may use or disclose a decedent’s protected health information in that situation only if the covered entity obtains an authorization from the decedent’s personal representative. The personal representative for a decedent is the executor, administrator, or other person who has authority under applicable law to act on behalf of the decedent or the decedent’s estate. The Department heard a number of concerns since the publication of the Privacy Rule that it can be difficult to locate a personal representative to authorize the use or disclosure of the decedent’s protected health information, particularly after an estate is closed. Furthermore, archivists, biographers, and historians had expressed frustration regarding the lack of access to ancient or old records of historical value held by covered entities, even when there are likely few surviving individuals concerned with the privacy of such information. Archives and libraries may hold medical records, as well as correspondence files, physician diaries and casebooks, and photograph collections containing fragments of identifiable health information, that are centuries old. Currently, to the extent such information is maintained by a covered entity, it is subject to the Privacy Rule. Accordingly, we proposed to amend § 164.502(f) to require a covered entity to comply with the requirements of the Privacy Rule with regard to the protected health information of a deceased individual for a period of 50 years following the date of death.

Proposed Rule

We also proposed to modify the definition of “protected health information” at § 160.103 to make clear that the individually identifiable health information of a person who has been deceased for more than 50 years is not protected health information under the Privacy Rule. We proposed 50 years to balance the privacy interests of living relatives or other affected individuals with a relationship to the decedent, with the difficulty of obtaining authorizations from personal representatives as time passes. A 50-year period of protection had also been suggested at a National Committee for Vital and Health Statistics (the public advisory committee which advises the Secretary on the implementation of the Administrative Simplification provisions of HIPAA, among other issues) meeting, at which committee members heard testimony from archivists regarding the problems associated with applying the Privacy Rule to very old records. See http://ncvhs.hhs.gov/050111mn.htm. We requested public comment on the appropriateness of this time period.”


Bricker & Eckler LLP: HIPAA Privacy Regulations: General Rules for Uses and Disclosures of Protected Health Information: Deceased Individuals – § 164.502f

Washington State – Grave Concerns Association Model of Memorialization

For the past few years I have tried to get the attention of state and federal lawmakers to pass a law in New York State that would provide for the release of patient names; dates of birth and death; and location of graves, of people who were committed to State Hospitals and Custodial Institutions during the nineteenth and early twentieth centuries who were buried in unmarked or numbered, anonymous graves, whether they be in formerly state, county, or city owned cemeteries. (See My Story) I also asked for a searchable, digital database, available to the public to be included in the bill. On August 22, 2011, I finally got the opportunity to meet with Kate Munzinger, Senator Joseph Robach’s Chief of Staff. Ms. Munzinger took the time to listen to what I was asking for.

Grave Concerns Association

Grave Concerns Association

The reason why I’m blogging about this issue again is because the bill in New York State has not yet become a law. There are caring people in several states who are pushing to get a similar law passed but state and federal representatives will not give them the time of day or they won’t even consider passing such a law because of the misinterpretation of the federal HIPAA Law. I want to help those people in other states by sharing with them what was shared with me. If not for Laurel Lemke, Chair of Grave Concerns Association, I don’t think I would have received the attention of Senator Robach. In 2004, Ms. Lemke and others, had fought for this cause, and managed to amend law 6678 in the State of Washington that allowed for the release of patient names for the purpose of memorialization. She emailed me the bill which I in turn gave to Kate Munzinger, Chief of Staff; Tim Ragazzo, Director of Operations & Legislation; and Senator Joseph Robach. A bill was drafted and introduced to the New York State Legislature in March 2012. The title of the bill is: “An act to amend the mental hygiene law, in relation to patients interred at state mental health hospital cemeteries.”

Western State Hospital, Pierce County, Washington, has 3,218 patients who are no longer anonymous. Grave Concerns Association has raised funds and replaced 1,200 names since 2004. The forgotten have been remembered with dignity. With community fund raising efforts and countless volunteers, inscribed headstones that identify the patient’s name, date of birth and death, have been placed at the graves; and a searchable, digital database has been uploaded to the internet. In contrast, New York State, with 22 or more former state custodial institutions combined has upwards of 11,000 or more people buried in anonymous graves who through no fault of their own have been erased from history. Willard State Hospital alone has close to 6,000 patients buried in anonymous graves.

Sherry Storms, Stacie Larson and Laurel Lemke, Grave Concerns Association, John Lucas, countless volunteers, and the State of Washington deserve to be recognized for their ground breaking, painstaking work, and above all, their model should be copied in every state in the union. The New York State bill is important and necessary in order to restore the dignity and personhood of the thousands of people who were incarcerated and died at former New York State Insane Asylums (later renamed State Hospitals), and State Custodial Institutions (for Feeble-Minded and Epileptic persons). When the bodies of the inmates were not claimed by family members, they were buried in anonymous, unmarked graves. Many of these unclaimed bodies went to medical colleges and pathology labs for the furtherance of medical science. These people deserve to be remembered, and we need to remember what happened to them so that we do not repeat the mistakes of our ancestors.

It is my hope that the State of New York, and all states, will pass similar legislation and follow the Washington State – Grave Concerns Model. They have done a great service for the community and the nation by naming the forgotten; setting up an exemplary, searchable, digital database; and trying their best to remove the stigma of mental illness.

Grave Concerns Association
Volunteer Carla Wutz, descendent of Michael Wutz, updates the data base on the Grave Concerns website.

Grave Concerns Cemetery Database – Version 1.0 – Western State Hospital Historic PatientCemetery

Washington State Archives – Digital Archives


1880 Forms of Insanity

In 1880, there were six general categories of insanity: Mania, Melancholia, Paresis (General Paralysis), Dementia, Epilepsy, and Dipsomania. Puerperal Mania was not included with these six but is listed for one woman in the 1880 Defective, Dependent & Delinquent U.S. Federal Census of The Willard Asylum for the Insane under the heading “Form of Disease.”


In the year 2010, The Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV), lists seventeen Criteria for Mental Disorders as opposed to the six general forms of diseases that were presented in 1880. DSM-IV Complete Criteria for Mental Disorders are: Adjustment, Anxiety, Child, Cognitive, Dissociative, Eating, Factitious, Impulse, Mental GMC (Disorder due to Medical Condition), Mood, Other, Personality, Psychotic, Sexual, Sleep, Somatoform and Substance.
(SOURCE: from the website of Dr. James Morrison at http://www.neurosurvival.ca/ClinicalAssistant/scales/dsm_IV/dsm_index.html)

 The HIPAA Law

Health Information Privacy
The Office for Civil Rights enforces the HIPAA Privacy Rule, which protects the privacy of individually identifiable health information; the HIPAA Security Rule, which sets national standards for the security of electronic protected health information; and the confidentiality provisions of the Patient Safety Rule, which protect identifiable information being used to analyze patient safety events and improve patient safety.

Understanding Health Information Privacy
The HIPAA Privacy Rule provides federal protections for personal health information held by covered entities and gives patients an array of rights with respect to that information. At the same time, the Privacy Rule is balanced so that it permits the disclosure of personal health information needed for patient care and other important purposes. The Security Rule specifies a series of administrative, physical, and technical safeguards for covered entities to use to assure the confidentiality, integrity, and availability of electronic protected health information.

For Covered Entities
The Privacy and Security Rules apply only to covered entities. Individuals, organizations, and agencies that meet the definition of a covered entity under HIPAA must comply with the Rules’ requirements to protect the privacy and security of health information and must provide individuals with certain rights with respect to their health information. If an entity is not a covered entity, it does not have to comply with the Privacy Rule or the Security Rule.

A Covered Entity is one of the following:
A Health Care Provider
This includes providers such as: Doctors, Clinics, Psychologists, Dentists, Chiropractors, Nursing Homes, Pharmacies…but only if they transmit any information in an electronic form in connection with a transaction for which HHS has adopted a standard.

A Health Plan
This includes: Health insurance companies, HMOs, Company health plans, Government programs that pay for health care, such as Medicare, Medicaid, and the military and veterans health care programs.

A Health Care Clearinghouse
This includes entities that process nonstandard health information they receive from another entity into a standard (i.e., standard electronic format or data content), or vice versa.”

Public Law 104-191, 104th Congress

An Act
“To amend the Internal Revenue Code of 1986 to improve portability and continuity of health insurance coverage in the group and individual markets, to combat waste, fraud, and abuse in health insurance and health care delivery, to promote the use of medical savings accounts, to improve access to long-term care services and coverage, to simplify the administration of health insurance, and for other purposes.


(B) Relates to the past, present or future physical or mental health or condition of an individual, the provision of health care to an individual, or the past, present, or future payment for the provision of health care to an individual.


(B) Relates to the past, present or future physical or mental health or condition of an individual, the provision of health care to an individual, or the past, present, or future payment for the provision of health care to an individual, and —

(i) identifies the individual; or

(ii) with respect to which there is a reasonable basis to believe that the information can be used to identify the individual.


SEC. 1177.

(a) OFFENSE. – A person who knowingly and in violation of this part –

(1) uses or causes to be used a unique health identifier;

(2) obtains individually identifiable health information relating to an individual; or

(3) discloses individually identifiable health information to another person, shall be punished as provided in subsection (b).

(b) PENALTIES. – A person described in subsection (a) shall –

(1) be fined not more than $50,000, imprisoned not more than one year, or both;

(2) if the offense is committed under false pretenses, be fined not more than $100,000, imprisoned not more than 5 years, or both; and

(3) if the offense is committed with intent to sell, transfer, or use individually health identifiable information for commercial advantage, personal gain, or malicious harm, be fined not more than $250,000, imprisoned not more than 10 years, or both.”

(SOURCE: http://www.hhs.gov/ocr/privacy/)

My Story by L.S. Stuhler – July 23, 2012

I include here my story about trying to obtain my great-grandmother’s medical records and photographs from the Willard State Hospital, along with asking for the release to the public of former patient names; dates of birth and death; and location of graves, in order that these forgotten people, of which there are thousands, may be honored and remembered with dignity. It all began on February 24, 2001, when I found my great-grandmother’s obituary: According to the “PennYan Democrat” newspaper dated August 17, 1928: “PUTNAM, At the State Hospital in Willard, Monday, August 13, 1928, Mrs. Margaret Putnam, aged 76 years. She is survived by one son, Jarvis Putnam, of PennYan. The funeral was held from the Thayer Funeral Home Wednesday afternoon, Rev. W.A. Hendricks officiating. Burial in Lake View cemetery.” 

It took a long time for me to figure out where I should be looking in order to obtain information about my great-grandmother. In 2001, I was unable to find anything on the internet pertaining to this issue which is the main reason I created this blog (July 10, 2011) and wrote the book The Inmates of Willard 1870 to 1900, A Genealogy Resource (December 17, 2011). In 2007, I came across an article about a new book written by Darby Penney, MLS, and Peter Stastney, M.D., entitled The Lives They Left Behind Suitcases From A State Hospital Attic. Wondering if my great-grandmother’s suitcase was among the 400 discovered in an attic of the Willard State Hospital, I contacted Ms. Penney. Unfortunately, it was not among the surviving suitcases. Ms. Penney’s book revealed the practice of burying “mental patients” in anonymous graves. I must admit that I had never heard of this practice before and thought it was extremely cruel. What amazed me most was that no one (that I knew of) had ever tried to rectify this sad, dehumanizing situation. What needs to be acknowledged is none of these well documented facts about the thousands of people buried in anonymous graves at Willard, and all former NYS Hospitals and Custodial Institutions, would ever have come to light without the tireless efforts of Ms. Penney, Dr. Stastney, and Mr. Craig Williams, Curator of History at the New York State Museum at Albany. I also need to thank Laurel Lemke, from the Grave Concerns Association, for sending me the law that she helped to pass in the State of Washington in 2004. Without her help in emailing me the bill, I never would have gotten the attention of Kate Munzinger, Senator Joseph Robach’s Chief of Staff. I met with Ms. Munzinger on August 22, 2011. Senator Robach introduced the bill to the New York State Senate in March 2012.

The following response letters, beginning in early 2008, are from everyone that I have contacted over the years. I have not included emails. Unless a modification is made to the present HIPAA Law and New York State Mental Hygiene Laws (See New HIPAA Update and S2514-2013), I and so many others like me, who want to know why our ancestor was committed to a state hospital, will never know the answer. My first response letter is dated April 16, 2008, in response to the original paperwork that my physician and I had sent in early September of 2007 (seven month wait). On August 13, 2008, I was denied a copy of my great-grandmother’s medical records and photographs from the Greater Binghamton Health Center. This three sentence response letter is the explanation given to me after waiting four months, taking the time and effort to speak with them on the phone, obtaining and filling out their required paper work with the help of my physician, and sending in the forms.

1- GBHC 04.16.2008

1- GBHC 04.16.2008

2 - GBHC 08.13.2008

2 – GBHC 08.13.2008

Besides writing a letter to former New York State Governor Patterson and present Governor Cuomo, both U.S. Senators from New York: Schumer and Gillibrand, State Senators, Congressmen, The Department of Correctional Services, The Commission on Quality of Care and Advocacy for Persons with Disabilities, The Office of Mental Health Counsel, and the State of New York Department of State Committee on Open Government (FOIL), I also wrote a letter to the doctor in charge of the Office of Mental Health Institutional Review Board asking permission to view, record, and publish the burial ledgers – names; dates of birth and death; and location of graves) located and stored at the NYS Archives. After waiting seven months for a response, I was told in an official letter, that my proposed study was not approved due to concerns about violating patient confidentiality. I was also told that I could take the New York State Office of Mental Health to court in order to get the names of former patients and the medical records of my great-grandmother, but seriously, who has the time and the money to go through all of that? Privacy ends at death but apparently patient confidentiality lasts forever.

I went through proper channels to obtain Maggie’s medical records and photographs. I filled out the paperwork, had my doctor and a witness sign the paperwork, and my doctor sent it in. I waited four months for a response and finally my doctor received a letter. I asked for the medical records and any photographs of my great-grandmother. When I received the response from the Greater Binghamton Health Center in August 2008, it stated the staff was unable to locate the requested file. Had I received my great-grandmother’s medical records, I would have been satisfied. Besides being genuinely interested in learning more about Willard, I created this blog for family genealogists like me, frustrated trying to find out if and when their ancestor was a Willard inmate, receiving the runaround obtaining their ancestor’s medical records and photos, and determining whether their ancestor is buried in the Willard Cemetery. The final answer came from the Commissioner of the NYS Office of Mental Health in responding to my inquiry by e-mail on October 25, 2010, which basically stated that publicly identifying former patients may be offensive to some families because of the stigma and repercussions that may follow, for example, in some small towns. I must say that I took offense to his statement because I live in a small town. What exactly was he trying to imply? It appears that we have not moved any further in our tolerance or understanding of people with problems and of people who live in small towns. I must say that my favorite letter is from the Commissioner, dated June 3, 2011, in which he reminds me “that the penalties for violations are very stiff – civil penalties under federal law can carry up to $10,000 per violation.”

Willard’s inmates who in life were incarcerated, forgotten, warehoused, and controlled by the state are once again controlled and intentionally forgotten in death by New York State, the New York State Office of Mental Health, or both. Perhaps they are interpreting the scope of the HIPAA Law incorrectly. The only logical assumption is the protection provided by these laws is not for long dead souls since U.S. Federal Censuses already reveal many of their names; it is for the protection of the descendants.

The responses from the Senators are interesting because they state that there is nothing they can do about the situation at Willard. They mention nothing about modifying the HIPAA Law which was one of the questions that I asked them to respond to. My understanding is that they are the only ones who can change or modify this federal law in order that descendants or anyone for that matter, would be allowed to have a copy of these historical medical records. When you’re dead, you’re dead. Who cares if someone looks at 80 year old medical records? The following letters were received by me from Senator Charles E. Schumer, dated January 9, 2012; and from Senator Kirsten E. Gillibrand, dated February 21, 2012. Perhaps this whole ridiculous situation of trying to uncover the identities and opening medical records of people who have been dead for one hundred years lies with the unique interpretation of the federal HIPAA Law by each individual state office of mental health.

Response Letter Senator Schumer 1.9.2012

Response Letter Senator Schumer 1.9.2012

Response Letter Senator Gillibrand 2.21.2012

Response Letter Senator Gillibrand 2.21.2012

14 - OMH 06.03.2011

14 – OMH 06.03.2011

13 - GBHC 09.07.2010

13 – GBHC 09.07.2010

11 - FOIL 06.04.2010-1

11 – FOIL 06.04.2010-1

12 - FOIL 06.04.2010-2

12 – FOIL 06.04.2010-2

10 - Correctional Services 01.15.2010

10 – Correctional Services 01.15.2010

7 - FOIL 12.10.2009-1

7 – FOIL 12.10.2009-1

8 - FOIL 12.10.2009-2

8 – FOIL 12.10.2009-2

9 - FOIL 12.10.2009-3

9 – FOIL 12.10.2009-3

5 - FOIL 09.25.2009-1

5 – FOIL 09.25.2009-1

6 - FOIL 09.25.2009-2

6 – FOIL 09.25.2009-2

4 - OMH Counsel 09.08.2009

4 – OMH Counsel 09.08.2009

3 - Quality Care Advocacy 09.01.2009

3 – Quality Care Advocacy 09.01.2009

Anonymous Graves In New York

It is indeed unfortunate that thousands of poor “sane” men, women, and children who lived and died in the county poor houses and other charitable institutions of our country were buried in unmarked, anonymous graves, but their final resting places can be marked with an engraved headstone. The same rule does not apply for those who were labeled “insane.” It is frustrating for family researchers who are interested in obtaining information about their ancestors who were incarcerated at one of these long closed insane asylums because of the federal HIPAA Law which states, The Office for Civil Rights enforces the HIPAA Privacy Rule, which protects the privacy of individually identifiable health information; the HIPAA Security Rule, which sets national standards for the security of electronic protected health information; and the confidentiality provisions of the Patient Safety Rule, which protect identifiable information being used to analyze patient safety events and improve patient safety.” Everyone has been forced to sign HIPAA documents at their doctor’s office. Most people interpret this law as one that applies to living individuals, not to people who have been dead for over one hundred years. What is even more confusing is that a few states have interpreted the law differently than New York State. NEW HIPAA Update 2013.

The Inmates of Willard, as well as all former inmates of New York State Hospitals, deserve a cemetery that is clearly marked with a dignified, cemetery appropriate sign. It should be well maintained and treated with respect like any other cemetery as a place where descendants and friends gather to pay respects, lay flowers, or meditate in silence. Some states have released the names of former patients buried in anonymous graves at these long-closed, state owned mental institutions, and they have allowed engraved headstones to be placed on the graves. In some cases, these states have provided funding for the headstones. It is my hope that the names of the patients buried in anonymous graves in cemeteries owned or formerly owned by the State of New York will be made available to the public in a unified, searchable, digital database. If these current laws are not modified, these people will forever remain forgotten and anonymous. After 143 years, the time has come to accept the mistakes of the past and turn a wrong into a right by releasing the names of the people buried at the Willard State Hospital Cemetery and all people buried anonymously in state mental institution cemeteries across America. They have waited long enough.

Thousands of people were incarcerated in state insane asylums during the nineteenth and early twentieth centuries. Anonymous burials are common for state mental institutions across New York State and the country. People genuinely do care and are interested in the way their ancestors were treated, how they died, and where they were buried.

Hopefully bill S2514-2013 will soon become a law and will include provisions for a searchable database available to the public. Interested people need to contact their New York State Senators and Assembly Persons to let them know that this bill needs to become a law so that these forgotten, anonymous souls will finally be remembered. 

The list of these former New York State Hospitals includes but is not limited to: BinghamtonBuffaloCentral IslipCreedmoorDannemoraEdgewoodGowandaHudson RiverKings ParkLong IslandManhattanMatteawanMiddletownMohansicPilgrimRochesterSt. LawrenceSyracuseUtica, and Willard

The Feeble-Minded (Intellectual Disabilities) and Epileptic Custodial Institutions of New York includes but is not limited to: Craig Colony for EpilepticsLetchworth Village for Epileptics & Intellectually DisabledNewark State School for Intellectually Disabled WomenRome State School for Intellectually Disabled Adults & Children, and Syracuse State School for Intellectually Disabled Children. There may be more.

What’s In A Name?

I am not a certified genealogist, but I can share with you a basic understanding of what’s in a name from years of experience in searching for my ancestors. Genealogy is the study of family ancestries and history. If all you needed was your ancestor’s name in order to connect them to your family tree; genealogy would be easy. To understand how it works, I will use my grandfather, who was NOT a patient at a state hospital, as an example. CARL SCHULZ was born on January 29, 1878 in Ötisheim, Württemberg, Germany, and died on January 16, 1970, in Rochester, Monroe County, New York. If you enter his name on Google, over 22 million hits will pop up. I entered the name “Carl Schulz” on an ancestry website and narrowed the search to Rochester, New York,  District 10; over 167,000 hits appeared. To make matters worse, the surname Schulz, is also spelled: Schultz, Schulze, Schultze, and Shultz, to name a few. While searching for my grandfather on the U.S. Federal Census, his given or first name has been listed as: Carl, Karl, Charles and Kurt. Keep in mind that the enumerators were human and made mistakes in the spelling of names, recorded ages incorrectly, and some had illegible cursive handwriting. If you don’t enjoy solving a mystery, then you won’t enjoy searching for your ancestors.

Carl Gottlieb Schulz 1940s

Carl Gottlieb Schulz 1940s

It all begins with a name; but a name means nothing if you don’t have the basic background information such as: date of birth; city, county, state and country of birth; date and place of death; names of parents and siblings, etc. Twelve years ago, when I began investigating my grandfather, all I knew was his name and that he was born in Württemberg, Germany. Our ancestors didn’t have much of an imagination when naming their children. I never realized how common my grandfather’s name was until I began my search. It took me years to uncover the names of his parents, siblings, and the town in which he was born.

According to The Lives They Left Behind by Darby Penney and Peter Stastny: 8,000 people entered Willard between 1869 and 1900, 1,500 were released as recovered; 54,000 people were admitted during the 126 years of operation. (1) There is no way of knowing who remained, who was released, and who was buried on asylum property without the burial ledger, and even then, names mean nothing to the general public unless they are attached to a particular individual. An inscribed headstone would not identify a specific individual unless it stated what city, county, state, country of origin, parents, etc. And even then, you would have to claim that person as your ancestor and notify the media that he or she was diagnosed with a mental illness in order to be “stigmatized.” This is why the NYS Office of Mental Health’s classification of New York State Hospital burial ledgers as a medical records is ridiculous. Privacy ends at death but Confidentiality Of Medical Records apparently lasts forever.

If you believe that your ancestor may have been an patient at the Willard State Hospital, then you have come to the right place. The U.S. Federal Census is a great place to start your search, but you need so much more than a name in order to confirm that the individual listed on the census is indeed your ancestor. Good Luck!

(1. Penney, Darby & Stastny, Peter, The Lives They Left Behind, Suitcases From A State Hospital Attic, Photographs by Lisa Rinzler, Bellevue Literary Press, New York, 2008, Page 36)