Asylum Projects Genealogical Requests
Asylum Project receives hundreds of individual genealogical requests from all sorts of people each year. The vast majority of requests fall into the category of someone who finds out that a family member had spent time in one of the institutions featured within this database. These requests tend to attribute an interest in learning more of the family member, what they were committed for, and information on the institution itself. Other types of requests tend to be burial requests and location requests.
However, one feature that pervades most requests, whether the requester realizes it or not, is the Health Insurance Portability and Accountability Act. (A.K.A. HIPAA) Because these genealogical requests are of either active mental health institutions or closed institutions, they are covered under the HIPAA. Because of this, genealogical requests involving mental institutions tend to be of special nature in regards to genealogical research. One result of this is that only family members are able to make/look at patient information in regards to their genealogical research.
Another fact that makes genealogical requests into people who spent time in a mental health facility, is the status of the facility. If the facility is still active, then the request has to follow whatever privacy rules the facility follows. If the request is of a facility that has closed, then on top the previous point, original records need to be tracked down and whoever is holding them now has their own privacy rules. One thing to keep in mind in both cases, is that there is not true symmetry to how the HIPAA laws are applied. What is true of one situation may not apply to another case.
Also, please keep in mind that everyone here at Asylum Projects are 100% volunteers. We do this on our own time and within limits of our knowledge. Sometimes we know how to find something specifically. Sometimes we don't. Yet, be aware that in the end the requester themselves will have to do most of the leg work as there is only so much help we can give.
From our experience, here are some things you should expect when doing genealogical research into mental health institutions:
- Expect to deal with the HIPAA laws. Even if you don't think they might apply to your situation, there have been many occasions where a hospital or archive worker has applied that law to something that it may not cover.
- Because of the HIPAA law, expect to jump through some hoops. Most likely you might need to go up in front of a judge or some other official to prove your relationship to person in question.
- Here are some common things regarding to the HIPAA law:
- You need to prove your direct relationship to the person. This might or will include birth certificates, death certificates, marriage certificates, etc.
- You should be of direct relationship to the person. (I.E. son/daughter, grandson/granddaughter, etc.) If you have an indirect relationship to the person, you may be denied access to the person's records or will need permission/help from a direct family member.
- If the person is still living, unless you are married to them, you must get their permission before viewing their mental health records.
- If the institution is still active, they might not have kept all the records from all the way from its beginning. Some institutions are diligent in maintaining these records. Others have moved their older records to some type of archives. While a few simply have destroyed the older records. This varies from state to state and even among individual institutions.
- If the institution has closed then things get even more complicated. In some cases the closed hospital's records were moved to another active institution. Other cases, the records were moved to archives or historical societies. In some other cases, records were simply left in the abandoned buildings. Workers simply just closed up the doors without attempting to remove valuable records. In this case, you most likely will have to track down where the old records went to, and then deal with whatever policies of the place who maintains the old records.
- While the vast majority of mental health institution workers have good intentions, most of the time they are overworked and buried under paperwork. Because of that, most mental health workers view genealogical requests as not a priority. Some will blow requests off or will only do a cursory search. Persistence is a must in those cases. If they are not willing to help you, bring in someone more powerful, like a state representative or one of their managers. Being persistent does work out in the end, even if it may not be the answer you were looking for. (Also, make sure not to insult them and be polite. Being rude in most cases won't get you anywhere.)
- Keep in mind about mental institution burial grounds: most institutions did not do any more then place the deceased person's patient number on their grave stone. Because of this, while you may figure out which burial grounds they are buried in, you may not be able to figure out which grave is theirs. Most institutions maintained lists of who is buried where in their cemeteries. In many cases, officials apply the HIPAA laws to this list and won't give out the names of those who are buried there. This applies especially to those who are not direct relatives. (Asking Asylum Projects for the names will not work either as we do not have access to the names ourselves, nor do we maintain burial lists.) Whether the HIPAA laws apply to the names of those buried in the institution cemeteries is debatable. Expect that you will most likely need to jump through some hoops to find that information.
Making Genealogical Requests on AP
If you still feel the need to request information from Asylum Projects, please keep in mind some things before make requests:
- The vast majority of the information we have on these institutions is already online. There is still a lot of research that needs to be done and this is a continual project that has no end. Yet, we are holding nothing back.
- We are a 100% volunteer. None of us a paid to do genealogical research and most likely don't have the time to devote to each person who requests help. This doesn't mean we don't care, it's just there is only so much we can do.
- Sometimes we may not have an answer. The best we can do is simply to point the way towards a place that might help you better.
- Please keep the HIPAA/privacy laws in mind. Even if you don't think they apply, the official you might work with, might think otherwise.
- In keeping with the last point, be prepared to jump through some hoops.
If you need to make a request or have a question, we have a special section within our forum for genealogical questions/requests. Please post your questions there and please start a new thread for each requests. This will keep things straight and organized for us. Also, please make sure that the question you want to ask hasn't been asked beforehand. Also note: creating an account is not required to post question, but is encouraged.