Tag Archives: Genealogy Links

Willard Cemetery at FIND A GRAVE

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New York State Hospitals at FIND A GRAVE

As I find more, I will add them to this list.

Willard State Hospital Cemetery: Willard Asylum Cemetery in Willard, New York – Find a Grave Cemetery

Gowanda State Hospital Cemetery: Gowanda State Hospital Cemetery in Collins, New York – Find a Grave Cemetery

Binghamton State Hospital Cemetery: Binghamton State Hospital Cemetery in Binghamton, New York – Find a Grave Cemetery

Central Islip State Hospital (No Names-Only Numbered Graves): Central Islip State Hospital Grounds Cemetery in Central Islip, New York – Find a Grave Cemetery

1893 Shocking Desecration Charged, Flatbush Insane Asylum

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Shocking Desecration Charged.
Flatbush Insane Asylum Doctors Said to Have Profaned a Dead Woman’s Body.

“I heard something the other day,” said a Brooklyn woman to a reporter for The New-York Times, “which I think should be made public. It was the story of what a certain doctor did who is employed in the Asylum for the Insane at Flatbush. My informant’s name I withhold for the reason that if I should give it to you a person related to him who is now employed in the asylum would certainly lose his place.

“My informant tells me that about a week ago an aged woman died at the hospital who had been there for a long time. According to the regulations of the institution, the doctor referred to, in company with others of the medical staff, viewed the corpse.

“The doctors were in a merry mood and made quite a lark of the inspection by cracking jokes about the body, and altogether behaving in an unseemly manner. Finally, as I am informed, one of the doctors took a cigarette out of his case and, approaching the bedside, said: ‘Let’s give the old lady a smoke.’

“Immediately thereafter he pried open the lips of the corpse and placed the cigarette between them. ” ‘How’s that, old gal?’ he exclaimed, and then all hands gathered about and made sport of what they saw.”

Dr. Tracey, physician in charge at the Kings County Insane Asylum at Flatbush, was seen by a reporter for The New-York Times and the foregoing statement was laid before him. At first his face flushed and then he gasped out: “It’s false – a malicious falsehood!”

“Doctor, I would like to know before we go any further what deaths occurred Friday, Saturday, and Sunday of last week of old women who had been inmates here for a long time.” said the reporter.

“How ling do you call a ling time?” the doctor asked; then added, “I cannot give you any information upon this subject. It is an imputation upon the whole staff of the asylum, and until the matter in complaint is laid before the Commissioners of Charities and Correction, I refuse to open my mouth.”

“Why do you refuse me the information which I seek?” asked the reporter. “Because I don’t choose to give it,” he replied. As the reporter was leaving him Dr. Tracey said: I haven’t said anything, you know.” Dr. Sylvester, the Superintendent, was away and could not be seen.

The reporter then visited the rooms of the Commissioners of Charities and Correction at Elm Place and Livingston Street, Brooklyn, where he saw Col. Gott, President of the board, and Commissioner Murphy. He learned there that Mary Hamilton; a woman sixty years of age and friendless, had died at the asylum a week ago yesterday, and that Elizabeth F. Meyer, seventy years of age, also friendless, had died there the next afternoon. One of these, doubtless Mary Hamilton, is the subject whose inanimate remains were so grossly maltreated.

On hearing the story, Commissioner Murphy at once expressed his absolute disbelief in its truthfulness. President Gott, however, thought that it might not be entirely without foundation, although he said his inclination was to regard it as he had come to regard all anonymous communications, “very gingerly.”

In speaking of the matter he said: “A thing of that kind might occur, but it is highly improbable. I do not think Dr. Sylvester, the Superintendent, would retain a doctor one minute when he learned of it. You know that the under help and staff at the asylum are beyond our reach, as we have no power to remove or appoint anyone except the Superintendent. We are constantly receiving many anonymous communications similar to this one, and when investigated they prove groundless, as I believe this one also will.”
SOURCE: The New York Times. Published: September 11, 1893. Copyright @ The New York Times.

Rochester State Hospital – Rochester, NY

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Rochester State Hospital, formerly Monroe County Insane Asylum
Rochester, Monroe County, New York
1600 South Avenue

The history of the Rochester State Hospital is a little confusing because the lines blur between the Alms House and the Insane Asylum which would later be known as the Rochester State Hospital. Four structures stood on the same tract of land, facing South Avenue, between Elmwood and Highland Avenues, in the Town of Brighton. None of these structures remain. The original Monroe County Poor House or Alms House was built in 1826. The Work House was built in 1853 at the cost of $22,707.60 and contained ninety-two cells for men, women, and occasionally children. In 1865 and again in 1868, fires broke out and the buildings were replaced. In 1869, new brick buildings were constructed. At some point the Work House was renamed, the Penitentiary. Before county “Insane Asylums” the “insane” were kept in jails and county poor houses, separated from the other inmates and usually in chains or handcuffs. The first buildings of the Monroe County Insane Asylum were opened in the spring of 1857. It is at this point that the lines become blurred because the official year of the opening of the asylum is 1863.

According to W.H. McIntosh: In 1856, “there were thirty-seven insane confined in thirteen cells [in the alms house]. These cells were low, unventilated, and unwholesome, and in dimensions but four and a half by seven feet. In this small space were crowded as many as four persons, some of whom, wild and raving, were chained and handcuffed. There was no out-yard, and no guards to stoves to prevent self-inflicted injury. It was resolved to erect a permanent and convenient building especially for the insane. It was constructed at a cost of somewhat over three thousand dollars, during 1856 and 1857.” (1) The Monroe County Insane Asylum opened in the spring of 1857 to accommodate forty-eight people and was under the supervision of Colonel J.P. Wiggins and wife. An additional wing to house the superintendent and employees was completed in October 1859 at a cost of $26,791.57. Because of the lack of room, several patients still remained in the Poor House. In 1870, an additional wing was constructed to accommodate twenty-five more patients. In 1871, the number of inmates rose to one hundred. In 1872 an entirely new, main building was constructed with forty-one rooms at the cost of $18,000, and with various improvements close to $50,000. Dr. M.L. Lord was the warden and physician beginning in 1868.

According to the 1872 Proceedings of the Board of Supervisors of the County of Monroe: “Your Committee in tracing back the history of Monroe County Insane Asylum to 1863, when, by an act of the Legislature, it was made a separate institution from the County Alms House, find that the whole number of inmates supported at that institution during the year was sixty-three. The number of inmates now in that institution have increased to 137, and has more than doubled during the last nine years…” (3, page 18).

The Alms House – In 1860, a building, “was set apart for the infirm old men.” (1) George E. McGonigal was the Superintendent, and Dr. Azel Backus was the physician. On February 28, 1872, a building committee was appointed for a new almshouse to be built at the cost of $59,600. “The almshouse was located midway between the insane asylum and the penitentiary, and fifty feet south. The architect employed was J.R. Thomas. The entire cost of the work was $72,948.44.” (1) In late 1872, the new Monroe County Alms House was completed and opened. It was built in front of the old and at some point thereafter, the original poor house was torn down.

The Insane Asylum – The State of New York purchased the land and the buildings of the Monroe County Insane Asylum for $50,000 bringing it into the State Care system. On July 1, 1891, it was renamed, Rochester State Hospital. Dr. Eugene H. Howard was the first Superintendent and served in that position for several years. (2) The Rochester State Hospital was torn down in the 1960s to make way for The Al Sigl Center. Rochester State Hospital faced South Avenue, the address was 1600 South Avenue. The Al Sigl Center faces Elmwood Avenue, the address is 1000 Elmwood Avenue.

So it appears that in 1857 a separate building was constructed for the sole purpose of becoming the Monroe County Insane Asylum. In 1863, by an act of the New York State Legislature, the asylum was officially separated from the alms house. In late 1872, the NEW Alms House was opened. In that same year, an entirely NEW main building was constructed for the Insane Asylum complete with a Mansard Roof. If you look at the sketch of these three buildings (W.H. McIntosh’s book of 1877), you can see that all three are separate but they stand side by side, three in a row: Far left, Penitentiary; Center, Alms House; Far right, Insane Asylum.

Work House, County Infirmary, Insane Asylum 1877

Work House, County Infirmary, Insane Asylum 1877

There is an interesting map that was drawn in 1984 during an excavation of Highland Park that shows the footprints of the original wood frame and brick buildings. At this time, the remains of approximately 900 people were discovered. (4) In April 2013, while researching the history of the poor house and the asylum, I came across the “Chaplain’s Report” from 1872 which stated that the unmarked cemetery, “familiarly known as the ‘bone yard,” was “an enclosed lot of the public farm in the rear of the penitentiary.” (3) This cemetery was located behind the old Penitentiary and was used to bury the inmates of the Penitentiary, Alms House, and Insane Asylum from 1826 until January 8, 1873 when the County Board of Supervisors directed the Superintendents of the Penitentiary and of the County Poor, “to discontinue the burial of paupers or criminals in the old burying ground attached to the penitentiary, and to have the remains of all such interred in Mount Hope cemetery.” (3) The county board of supervisors of 1872 were well aware that this cemetery existed but apparently, it was never recorded. Perhaps the document concerning this cemetery hasn’t been discovered yet. The Remember Garden in Highland Park marks the location of this long forgotten cemetery.

Map of Penitentiary, Poorhouse, Asylum

Map of Penitentiary, Poorhouse, Asylum

305 bodies were interred at Mount Hope Cemetery in 1985. The remaining bodies (approximately 600) (4) were left in the ground at Highland Park. The picture below shows a man preparing the ground for the monument that was or will be placed in memory of these original inmates. There is NO monument in Mount Hope Cemetery for the inmates of The Monroe County Insane Asylum / Rochester State Hospital, most of whom were buried in anonymous, unmarked graves in Section Y. If bill S2514-2013, which was introduced to the New York State Legislature by Senator Joseph Robach, becomes a law, then these people will no longer be anonymous.

Mount Hope Cemetery 11.2011

Mount Hope Cemetery 11.2011

“Work is now underway to install a monument in memory of the 305 Rochester poor house remains now interred in Mount Hope Cemetery. From the picture you can determine that the monument is in Section Y at the far west end. Note the Civil War plot, the Fireman’s monument and the Steam Gauge and Lantern Co. monument in the background. In July, 1984 when terracing land for a Highland Park addition, a bulldozer unearthed some human remains near the SE corner of Highland and South Ave. Investigation proved these burials were very old. It is believed they are from the Rochester poor house. The burials were not marked and the people were interred in the most simple wooden coffins. These remains underwent an examination prior to their reburial in Mount Hope Cemetery.” 11/2011

I have transcribed the earliest records: Names: Monroe County Poorhouse, Asylum, Penitentiary, Other Charities 1838 to 1860. If you believe that your ancestor was an inmate who lived and died at The Monroe County Insane Asylum / Rochester State Hospital you can search for them at the Rochester – Mt. Hope Cemetery Records online. Here is a brief description of what you will see if you decide to search the records for yourself: Under the heading “Residence,” a street name will be given with no specific address; or it will list the place where the person died such as: Insane Asylum, Asylum, County House, Jail, etc. (Be aware that there was an Asylum Street in the City of Rochester that as far as I know, had no connection with the Monroe County Insane Asylum). About 1891, you will start to see the words “Rochester State Hospital” under “Residence.” At some point in the 1900s, instead of listing the place of death as Rochester State Hospital the address has been given instead as “1600 South Avenue.” In some instances, the family of the deceased claimed the body and buried them in the family plot. In the case of pauper and indigent insane, the hospital buried them in unmarked, anonymous graves at Mount Hope Cemetery. Some unclaimed bodies were donated by state hospitals to state medical colleges for the advancement of medical science in which case no grave will be found.

SOURCES:

1 – McIntosh, W.H., History of Monroe County, New York; With Illustrations Descriptive Of Its Scenery, Palatial Residences, Public Buildings, Fine Blocks, and Important Manufactories, From Original Sketches By Artists Of The Highest Ability. Philadelphia: Everts, Ensign & Everts, 1877, Pages 45-47, Transcribed by L.S. Stuhler.

2 – Hurd, Henry Mills; Drewry, William Francis; Dewey, Richard; Pilgrim, Charles Winfield; Blumer, George Adler, The Institutional Care of the Insane in the United States and Canada, The John Hopkins Press, Baltimore, Maryland, 1916, Pages 199-200, Transcribed by L.S. Stuhler.

3. – Proceedings of the Board of Supervisors of the County of Monroe, for 1872, Rochester, N.Y., Steam Press of Curtis, Morey & Co., Union And Advertiser Office, 1872, Pages 18, 211, 212.

4. – Steckel, Richard H. and Rose, Jerome C., The Backbone of History: Health and Nurtrition in the Western Hemisphere, Cambridge University Press, 2002, Page 162.

Friends of Mt. Hope Cemetery – The Friends of Mount Hope Cemetery are a wonderful group of knowledgeable volunteers who will help you locate your loved one and provide you with all the information you need to locate the grave.

Facebook – Friends of Mt. Hope

USGenWeb Monroe County, NY – Mt. Hope Cemetery Tombstone Transcriptions

Records of the Rochester State Hospital

Photographs of Memorial to Residents of Almshouse, Insane Asylum & Penitentiary by L.S. Stuhler

History of Mount Hope Cemetery – McIntosh 1877

Rochester History – Life and Death in Nineteenth Century Rochester by Ruth Rosenberg-Naparsteck, pages 12 – 22.

1872 “Bone Yard” – The Remember Garden – Rochester, NY by L.S. Stuhler

1873 Monroe County Poor House

The Willard and Rochester State Hospital Connection by L.S. Stuhler

CLICK HERE TO VIEW THE VIDEO They’re Buried Where? by Seth Voorhees

The Inmates Of Willard 1870 to 1900  A Genealogy Resource by L.S. Stuhler

1876 The Case Of The Lunatic Boy – Part 2

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The following is the testimony of Mary F. Ambrose, mother of Oliver D. Ambrose (the lunatic boy), transcribed from VAN KEUREN, Mary J., The government asylum. Horrible and extreme cruelty to the army and navy patients, Supplement only. 1876, pages 29-32. Several names are included in her document:

Mary J. Van Keuren, George W. Bontz, Sarah Bontz, Elizabeth Bontz, Jacob E. Bontz, John Bontz, Joseph Price, T.J. Gardner, Dr. C.H. Nichols, Alfred D. Nichols, Dr. Pliny Earle, Dr. W.B. Magruder, George R. Adams, Dr. Stone, Mrs. Sarah Adams, Mrs. Elizabeth Gludman, Judge Boone, Samuel E. Arnold, Mrs. Gladmon, Dr. Thompson, Dr. Benjamin F. Dexter, General Loomis, Dr. Morrell, Dr. Chase, B.G. Blakesley, Dr. Daly, J.W. Wallace, Hetterman, Mr. Tuft, Mrs. Taylor, Dr. Powell, Dr. Case, Dr. Toner, Dr. Hamlin, Mrs. Tobin, Dr. Walker, George M. Dow, General B.F. Butler, P.T. Woodfin, Eugene M. Wallace, Timothy Lynch, John Boyle, John E. Benson, O’Connell, Lieutenant Dannenhower, Jane Beatty, John A. Darling, Theodore F. Wilson, Mr. Mellish (Millish?), Dr. Thompson, Mr. O.W. Marsh, Henry Miller, Mr. Lyon, Mr. Baker, H.L. Weeks, Henry B. Taylor, Mr. Lane, Mary F. Ambrose, Oliver D. Ambrose, Dr. Eastman, Dr. Franklin, Senator Wade, Williams, C.F. Carter, Frank McAdams, Hetterman, General Barnes, William Edgar Van Keuren, Vice Admiral David D. Porter, H.H. Buck, William A. Knox, W.C. Lyman, G.O. Roker, J.A. Emmons, Secretary of the Navy George M. Robeson, Dr. C.H. Crane. 

“Testimony of MARY F. AMBROSE. This witness had a son, Oliver D. Ambrose, who became insane from the effect of the assassination of President Lincoln, who happened to be sitting near the box in which Mr. Lincoln was killed. When Booth jumped out of the box Oliver shouted ‘Booth!’ ‘Booth!’

After a while Mrs. Ambrose placed her son in the Asylum, Dr. Eastman showing her a ward where her son would be cared for, which was satisfactory. The witness stated that she made efforts to see her son time and time again, and could never do so. She then took assistance with her, and was refused. The witness then said: ‘I will see my son this morning, or that door shall come down.’ ‘Well,’ said Dr. Eastman, ‘if you must see him, you can.’ Dr. Franklin then opened the door and I pressed in, and he took me through a long corridor where the patients were all seated on benches. He conducted me along until I got to the end of the corridor, and then took me down some steps, and brought me into a little corner of a place, not much larger than a man could lie down in – a little vestibule, it looked like, but they called it a ‘strong room.’  ‘Said I, What do you call this room? Said he, That is the ‘strong room.’ Why, there is no heat. It was cold as possible in there, and the poor boy was blue with cold. His skin seemed to be perfectly purple. He was cold and trembling all over, and had fallen away so much in flesh that I scarcely knew him. When the door was opened he screamed out, ‘Oh, my ma, are you going to take me home?’ My son ran up to me, and I put a shawl around him, and he said, ‘Ma, are you going to take me home? ‘Please take me home.’ I said, ‘I certainly shall,’ and I turned to Dr. Franklin and said, ‘Ain’t you ashamed of yourself, to treat a poor boy like that? How could you do such a thing?’ He was very cool, and said to me, in an off-handed way, ‘Madam, if your son is insane, here is the place for him.’ I took my son and carried him into the parlor. He was covered with vermin. His back was actually eaten away by vermin. they had eaten holes in his body. There were marks of violence on his body and arms. He did not show any violence. He was in the Asylum eight weeks. He weighed 155 pounds when I put him in, and 90 pounds when I took him out.

We forbear quoting all this witness stated, for the reason the case was so horrible and cruel that language fails to describe it.

Efforts were made at that time (1865) to investigate the management. Senator Wade moved in the matter, but nothing could be done. The power was safe; the neglect of duty was safe; the cruel and inhumane treatment was safe from the outside eye; the ignorant and beastly assisting physicians were safe in their conduct. Insane persons or any one within the walls complaining were not listened to. The brutish, cruel attendants could beat, bruise, kick, and ill-treat the patients without risk of a discharge, with a few exceptions.

Is it possible that in 1865, a few weeks after the boy Oliver D. Ambrose was placed in the Asylum, Dr. Franklin or Dr. Eastman could not discover whether the boy was insane or not?

The fact is plain that those assisting physicians (so-called) either did not know anything about insanity, or that they had not seen the boy for eight weeks, during the entire time the boy was there. We charge the fact to be that neither Eastman or Franklin had seen the boy. Take the testimony, which is not disputed. Mrs. Ambrose’s mother called, but could not see her grandson. No one but his mother could see him, was the answer. then his mother made efforts, and after a time she was admitted. Note the answer of Dr. Franklin: ‘Madam, if your son is insane, this is the place for him.’ This remark shows that Franklin did not know the boy’s case. No doubt whatever he had not seen him before. But it turned out that the boy was not insane, and if Franklin or Eastman had attended to their duty they would have found the boy weeks before well enough to go home. Not one item of proof did the defense show or attempt to show that the boy had been examined by any physician from the day he entered until he left, to show his case whether better or worse. This is one case, and if the graves could speak others of the like, only worse, could answer.

Why did not the defense call Dr. Franklin from New York city to show how this boy had been treated. We answer, because he was not a man like Eastman, who disgraced himself in the mind of every man who read his testimony, or who may read it hereafter.

Take the questions of counsel to Dr. Eastman and his answers, and it will plainly be seen that fraud and false-coloring was designed. How very ridiculous the pretense to discredit the testimony of Darling. Why did the Doctor not go and get the reports made to the Adjutant General, and show by the hand-writing? The pretense of a memoranda in his pocket was foolish, when he had the means within his power, if the witness had not stated truly; and besides, Dr. Nichols himself does not deny that Darling acted as clerk, and that every word he testified to was true.

How long will such sham be tolerated? There is altogether too much money to be used in the management by one man to expect justice and humanity to prevail without a struggle – a desperate struggle. Money is power, and it often crushes justice. The people will sooner or later put out such management.

These witnesses show extreme cruelty of one kind or another, more or less extending over many years, showing such neglect of duty on the part of the Superintendent as no man can excuse, and such as cannot be excused or suffered longer to exist. In fact the neglect on the part of the Superintendent shows such a disregard of duty, of official oath, that it comes clearly within high misdemeanor; the cruelty is revolting to all feelings of humanity.

The testimony shows that the Superintendent for several years has given but little attention to the patients; that he has trusted the inside of the asylum to assistants who the testimony shows to have been incompetent almost from the first, as the present attending physicians are. The neglect has been so great and the attendants so very incompetent that nothing short of a clean wiping out of every man in charge will answer the demand of the people.

If the reader of these pages will read but a tithe of the testimony, and then read the law of the asylum, he will say, as Boynton said, that if half is true hanging would be too good for every one of them. No man will say that the testimony against the management is not true and overwhelming. Comments cannot add to its force and convincing elements. There are such numbers, such quantity, giving particulars, acts, facts, and circumstances that all effort to explain, to excuse, becomes swamped at once, and no power to extricate.”

Discussing Public Charities – New York Times – June 11, 1879
On June 10, 1879, Dr. C.H. Nichols, President of The Association of Medical Superintendents of American Institutions for the Insane, resigned. It is unclear if he was forced out or if he was retiring. 

1876 The Case Of The Lunatic Boy – Part 1

A Day at Willard Cemetery 5.18.2013

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On Saturday, May 18, 2013, I visited the Willard Cemetery for a second time. This was the day of the annual Willard Tour that benefits a day care center on the old Willard property. Hundreds of people attended the tour and a good crowd gathered at the cemetery. Quite a bit has changed since my first visit on May 14, 2011, when the grass was up to my knees and no one was there but me, my husband, and two of our friends. It was a very sad place. The Willard Cemetery Memorial Project was formed by Colleen Kelly Spellecy in 2011. She has done a fabulous job organizing the group, having a sign installed at the entrance, raising awareness about the project, getting the cemetery lawn mowed, and collecting donations. I was happy to see so many concerned people at the cemetery.

Now there is hope, not only for the Willard Cemetery but for all state hospital and custodial institution cemeteries across the State of New York. A bill was introduced to the NYS Legislature in March 2012 and was re-introduced on January 18, 2013 as S2514-2013. If this bill becomes law, then the names of our forgotten ancestors will be released. They will finally be honored and remembered with dignity. This bill specifically addresses the “burial records” issue. Although HIPAA has stepped out of the way to allow individual states to release “medical records” 50 years after a patient has died, I am not sure if this issue was specifically addressed in this bill. Let’s take one step at a time and be grateful for what is in the works right now! Anyone who has ever dealt with the New York State Office of Mental Health in trying to obtain any type of information on an ancestor, whether it concerns asking where they are buried or obtaining a medical record, knows how arrogant and non-responsive they are unless you have a Ph.D. after your name. This needs to change.

Another fact that people don’t realize is that the great majority, if not all, of these historical cemeteries are “inactive” which means no one else will be buried there. I hope that ALL names are released including more recent burials. For example, when Willard closed in 1995, a gentleman was transferred to another facility. When he died in 2000, he asked to be buried in the Willard Cemetery because this was his home. Who will be here in 2050 to add this man’s name to a headstone or memorial? Who allowed these cemeteries to become forgotten?

Who was sent to Willard? Anyone who was not considered “normal” including the elderly with Dementia and Alzheimer’s Disease. Remember, there really were no nursing homes until the 1950s. Others were Hearing Impaired, had Developmental Disabilities, were Trauma Victims including Victims of Domestic Violence and Rape (back then they called it “Seducer’s Victim”), had PTSD (Soldier’s Heart & Shell Shock), Menopausal Women, Depression, Anxiety Disorders, Brain Injuries, Stroke Victims, Epilepsy, Neurological Disorders, Psychiatric Disorders, and some were locked up because of their sexual orientation, personal beliefs, and religious beliefs. These people, their families, and descendants, have nothing to be ashamed of. That would be like being ashamed of heart disease or diabetes. Putting names on a memorial, headstone, or list, should not be offensive to anyone.

Also attending the tour on this day was Seth Voorhees, Senior Reporter for the Time Warner Cable news channel YNN that serves Rochester and the Finger Lakes. Mr. Voorhees was genuinely interested in my mission to get this law passed in New York and offered me the opportunity of an interview. Although I am not a public speaker, I jumped at the chance to get the word out to a larger audience. I can’t thank him enough for all the time he spent putting this video report together. This piece aired on YNN, Saturday, May 25, 2013. I also need to thank Senator Joseph E. Robach for drafting and introducing the bill to the New York State Legislature. I hope this piece will raise awareness about the anonymous graves issue as this was never about patient confidentiality, it’s about respect.

CLICK HERE TO VIEW THE VIDEO They’re Buried Where? by Seth Voorhees.
Not Forgotten by Colleen Spellecy.

The list of these former New York State Hospitals includes but is not limited to: Binghamton, Buffalo, Central Islip, Dannemora, Edgewood, Gowanda, Hudson River, Kings Park, Long Island, Manhattan, Matteawan, Middletown, Mohansic, Pilgrim, Rochester, St. Lawrence, Syracuse, Utica, and Willard.

The Feeble-Minded and Epileptic Custodial Institutions of New York includes but is not limited to: Craig Colony for Epileptics, Letchworth Village for Epileptics & Developmentally Disabled, Newark State School for Developmentally Disabled Women, Rome State School for Developmentally Disabled Adults & Children, and Syracuse State School for Developmentally Disabled Children. There may be more.

Seth Voorhees & Lin Stuhler 5.18.2013

Seth Voorhees & Lin Stuhler 5.18.2013

Roger Luther from nysAsylum.com & Lin Stuhler 5.18.2013

Roger Luther from nysAsylum.com & Lin Stuhler 5.18.2013

Colleen Spellecy, Craig Williams, Lin Stuhler 5.18.2013

Colleen Spellecy, Craig Williams, Lin Stuhler 5.18.2013

Willard Cemetery Sign 5.18.2013

Willard Cemetery Sign 5.18.2013

Willard Cemetery Memorial Project 5.18.2013

Willard Cemetery Memorial Project 5.18.2013

Willard Cemetery 5.18.2013

Willard Cemetery 5.18.2013

Old Metal Marker 5.18.2013

Old Metal Marker 5.18.2013

Willard Cemetery 5.18.2013

Willard Cemetery 5.18.2013

This photo is of the Civil War Veterans Section of the cemetery. They were provided with clearly inscribed headstones from the government. Colleen discovered that a few of them were not “inmates” of Willard but were residents of the town. I wonder how many other United States Veterans who served their country with honor but ended up at Willard are buried here among the 5,776 in anonymous graves?

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

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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.

SOURCES

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

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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.

Mission

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.

Description

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.

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The Iron Coffin – Eastern State Hospital Cemetery

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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?

ESH 1

ESH 1

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!

ESH 2

ESH 2

“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.”

ESH 3

ESH 3

1880 Sickness – U.S. Federal Census – IPUMS USA

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IPUMS USA stands for: Integrated Public Use Microdata Series (Census Microdata For Social And Economic Research). I found this invaluable website in 2009 when I was transcribing the names of the Willard Asylum patients from the U.S. Federal Censuses. This particular page lists the common diseases found in the United States in 1880 and was re-printed from the IPUMS USA website. I hope you will take the time to check it out for yourself. It is a wonderful resource!

IPUMS-USA is a project dedicated to collecting and distributing
United States census data. Its goals are to:

  • Collect and preserve data and documentation
  • Harmonize data
  • Disseminate the data absolutely free!

1880 Sickness on Day of Enumeration Codes

The SICKNESS variable captures the self-reported health condition which kept the individual from working on the day of enumeration. The first two digits designate the general category of illness, while the second two designate the specific illness within the category. The 1880 Census contained five other questions reporting those considered insane, idiotic, maimed, blind or deaf. These five extra categories are included in SICKNESS to capture the extra detail which was sometimes provided in these separate variables. The general categories are as follows:

Sickness Terminology

The terminology relating to sicknesses found in the census manuscripts presented a mixture of precision and vagueness. At the time the 1880 census was taken, bacteriology was a recent development. Nonetheless, many illnesses were readily identifiable through physical symptoms. Measles, for example, seem to have offered little difficulty in lay diagnostics, nor did malaria (referred to as malaria, ague, remittent fever, intermittent fever, or bilious fever) or typhoid fever (typhoid, gastric fever or enteric fever).

Other seemingly precise diagnoses were not as well defined as one might imagine. Chronic nephritis was still commonly used to describe that which caused general or localized edema. “Chronic nephritis” includes, therefore, not only those cases so specified, but also “dropsy,” “Bright’s disease,” and “gout,” besides the spelling variations relating specifically to the kidney. Rheumatism and paralysis were still used as symptomatic descriptions of conditions rather than as clinical diagnoses. The designation of “rheumatism” appears to have included any condition which prohibited free movement, such as rheumatoid arthritis, coxalgia (scrofula, or tuberculosis of the joints) and syphilis, while “paralysis” included conditions which preclude movement or the control of movement, such as traumatic injury, stroke, metabolic disorders or syphilis.

Use of the Sickness Variable

Since the intent of the sickness question was to ascertain whether individuals were prevented from carrying out their normal activities due to sickness or disability, the response rates underreport illness in the population in two ways.

First, sickness among children will be underrepresented since most children did not have jobs or obligations outside the home. The Census Office did even not include those under the age of 15 when they tabulated the sickness data. Sickness rates for young children produced from the IPUMS 1880 sample are extraordinarily low and should be treated with caution.

The second underreporting of sickness is due to the failure to include those illnesses which limit as well as those that prevent regular activities, as was done for later censuses. A difference, therefore, in morbidity rates between race categories does not necessarily indicate an absolute difference in the prevalence or incidence of disease. It could instead indicate a difference in the perception of illness, tolerance thereof, or the ability or necessity to keep on with one’s activities in spite of it.

Users should also keep in mind the limitations inherent in self-diagnosis as well as possible biases related to nineteenth-century medical terminology and the general understanding of diseases. It may be impossible, for example, to determine the true incidence of pulmonary tuberculosis in a given population because of the potential for misdiagnosis between tuberculosis and various diseases of the respiratory system, such as bronchitis.

Sickness on Day of Enumeration

01 Infectious Disease

01 01 Typhoid Fever
01 02 Typhus Fever
01 03 Malaria
01 04 Smallpox
01 05 Measles
01 06 Scarlet Fever
01 07 Whooping Cough
01 08 Diphtheria
01 09 Cholera
01 10 Dysentery
01 11 Erysipelas
01 12 Chicken Pox
01 13 Mumps
01 14 Rheumatic Fever
01 15 Fevers (not elsewhere classified)
01 16 Meningitis

02 Chronic Disease

02 01 Rickets
02 02 Tumors (not elsewhere classified)
02 03 Rheumatism
02 04 Scurvy
02 05 Diabetes
02 06 Anaemia
02 07 Alcoholism
02 08 Hydrocephalis

03 Tuberculosis

03 01 Pulmonary Tuberculosis
03 02 Potts Disease
03 03 White Swelling
03 04 Tuberculosis, other organs
03 05 Disseminated Tuberculosis

04 Venereal Disease

04 00 Venereal Disease (not elsewhere classified)
04 01 Syphilis
04 02 Gonorrhea

05 Cancer

05 01 Cancer of Stomach, Liver
05 02 Cancer of Breast
05 03 Cancer of Skin
05 04 Cancer (not elsewhere classified)

06 Diseases of the Nervous System

06 01 Migraine, Headache
06 02 Fainting, Vertigo
06 03 Locomotor Ataxia
06 04 Cerebral Hemorrhage
06 05 Paralysis
06 06 Convulsions
06 07 Chorea
06 08 Epilepsy
06 09 Neuralgia, Neuritis
06 10 Other Nervous System Disorder
06 11 Eye Disease
06 12 Ear Disease

07 Diseases of the Circulatory System

07 01 Pericarditis
07 02 Organic Heart Disease
07 04 Functional Disorders of the Heart
07 05 Disease of Arteries
07 06 Disease of Veins
07 07 Lymphatic System
07 09 Hemorrhages

08 Diseases of the Respiratory System

08 01 Influenza, Cold
08 02 Acute Bronchitis
08 03 Chronic Bronchitis
08 04 Pneumonia
08 05 Pleurisy
08 06 Pulmonary Congestion
08 07 Asthma
08 08 Other Respiratory

09 Diseases of the Digestive System

09 01 Throat
09 02 Ulcers
09 03 Dyspepsia
09 04 Other Stomach
09 05 Diarrhea, Enteritis
09 06 Colic
09 07 Hernias, Obstruction
09 08 Other Intestinal
09 09 Atrophy of Liver
09 10 Other Liver
09 11 Disease of Spleen

10 Diseases of the Genito-Urinary Tract

10 01 Chronic Nephritis
10 02 Other Kidney
10 03 Urinary Tract Calculi
10 04 Disease of Bladder
10 05 Disease of Urethra
10 08 Inflammation, Prostate Gland
10 11 Strangury

11 Conditions of the Puerperal State

11 01 Pregnancy
11 02 Childbirth
11 03 Puerperal Septicemia
11 04 Illness After Childbirth
11 05 Other Puerperal
11 06 Miscarriage

12 Illnesses Unique to Women

12 01 Menstruation
12 02 Menopause
12 03 Uterine Ailment
12 04 Other Female

13 Diseases of the Skin and Adnexa

13 01 Furuncle
13 02 Acute Abcess
13 03 Hemorrhoids
13 04 Other Skin Disease

14 Diseases of the Skeletal System

14 01 Leg, Ankle, Foot
14 02 Hip
14 03 Back or Spine
14 04 Dental
14 05 Necrosis

15 Congenital Malformation

15 01 Congenital Malformation
15 02 Merasmus
15 03 Other Congenital Conditions

16 Diseases and Debility of Old Age

16 01 Feebleness
16 02 Senility

17 General Debility

17 01 Chronic Illness (not elsewhere classified)
17 02 Poisoned

18 Ill-Defined Sicknesses

18 01 Unspecified Illness
18 02 Incomplete Information
18 03 Miscellaneous

21 Mental Disease, Insanity

21 00 Melancholy
21 01 Mania
21 02 Hysteria
21 03 Nerves
21 04 Dementia
21 05 Insane (not elsewhere classified)

22 Mental Retardation, Idiocy

22 00 Idiotic

23 Traumatic Injury, Maimed

23 00 Maimed
23 01 Burns
23 02 Gunshot Wounds
23 03 Accidents
23 04 Injury to Leg, Ankle
23 05 Injury to Hip
23 06 Injury to Arm, Hand
23 07 Injury, Ribcage
23 08 Injury to Back, Spine
23 09 Amp or Missing Limbs
23 10 Other
23 11 Other Fractures
23 12 One Eye

24 Vision Impairment, Blind

24 00 Blind

25 Aural Impairment, Deaf

25 00 Deaf

26 00 Dumb

98 00 Illegible

99 00 Not applicable

99 99 Missing”

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

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“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.”

READ THE ENTIRE ARTICLE AT:

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