How Are States Addressing Patient Mental Health Privacy?

JenniferPhotoJennifer Bernstein, JD, MPH
Senior Attorney, The Network for Public Health Law—Mid-States Region
University of Michigan School of Public Health

We continue our series on the interplay between patient privacy and families’ interest in their loved one’s care. Here, Attorney Jennifer Bernstein covers what two states are doing to allow for increased family involvement.

How Are States Addressing Patient Mental Health Privacy?
Though HIPAA is not necessarily a bar to family members obtaining information about their loved ones with mental illness, the wishes of patients are usually paramount. Some states have adopted more innovative legal provisions to help assist families and patients in both protecting privacy while improving care.

New York
In New York, even in cases where the family members are unable to obtain permission to receive information about their relatives, New York State Mental Hygiene Law not only allows but requires the involvement of an authorized representative of the patient in treatment planning. Authorized representatives can include family members. The law presumes that such involvement has important therapeutic benefits to the patient and assists in the patient’s treatment and recovery. The law performs a balancing act.  It assists families by allowing the disclosure of limited information, but does not compromise or reveal confidential information that should be kept between therapist and patient. The goal of the law is to increase family involvement without obtaining the express permission of the patient and without violating confidentiality.

Information disclosed to family members can include information about:

  • programs available for the patient
  • rights and privileges of the patient and family members
  • family visits
  • legal status of the patient, and
  • discharge plans

Also, if not clinically contraindicated and appropriate, health care providers can share information provided by the family with the patient, such as relaying messages of support.

An innovative Minnesota law creates a new type of information release for family caregivers and clarifies the rights of families with respect to the care, treatment and monitoring of loved ones with a mental illness. The law, called the “family involvement law,” allows for limited but important information to be released to family caregivers of patients with mental illness.

In the case of patient’s that do not elect for a full privacy release of information to family members, the law creates an alternative to signing a full privacy release. Under the law, patient’s may sign a partial information release that allows providers to disclose information about:

  • diagnosis, admission to or discharge from treatment
  • name and dosage of medications prescribed
  • side effects of medication
  • consequences of the failure to take prescribed medications, and
  • summary of the patient’s discharge plan

In the Minnesota law, any person can request mental health information about a person with a mental illness if they either

  • live with the person with a mental illness, or
  • cares for or helps obtain care for the person with a mental illness, or
  • directly involved with monitoring the well-being of the person with a mental illness

To ensure the rights and privacy of patients, the law requires that the caregiver’s involvement must be verified by someone such as a mental health or health care provider, the individual’s doctor, or anyone other than the caregiver putting in the request.

Family advocates for patients with mental illness were the driving force behind the laws in New York and Minnesota. Raising awareness about the benefits to family involvement in patient care, as well as the legal challenges families face in obtaining information about their loved ones can help spur change in other states.

Your Turn

  • In what ways are New York and Minnesota getting it right?  What’s wrong with their approach?
  • What’s happening in your state? Are you supporting it or not?

[poll id=”18″]

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In Texas law, under certain circumstances, a covered entity may disclose PHI without the authorization of the person who is the subject of the protected information. Those circumstances include, but are not limited to, disclosures made to or in connection with a health oversight agency for audits and investigations, a threat to public safety, and situations involving victims of abuse or neglect. Also, if you are incapacitated or in an emergency, providers sometimes may use or disclose your PHI without your authorization if, in the exercise of medical judgment, they determine it is in your best interests. Your PHI may also be disclosed without your authorization if the disclosure is required by law, including a subpoena or court order. I need to learn more before I comment regarding my support on this, but for the moment, I certainly agree that if someone is incapacitated or in an emergency, the family or a suitable representative needs notification. 


In terms of the New York Mental Hygiene law, I like the idea of an "authorized representative of the patient" being involved, as I typically presume that such involvement has important therapeutic benefits to the patient and assists in the patient’s treatment and recovery. I am glad that it assists families by allowing the disclosure of limited information, but does not compromise or reveal confidential information that should be kept between therapist and patient. Still, I would have to know more details regarding not obtaining the express permission of the patient. I find it very important to not violate confidentiality, and I think that is part of what makes patients feel out of control of their own decisions. Still, I know from being a family member myself with a parent with bipolar disorder and alcoholism, that there are times that patients are not well and do not communicate well and I felt I needed to have information. I think the New York law would cover what I needed. 

In regard to the Minnesota law, I find partial releases very helpful, versus patients signing a full privacy release. The partial information release sounds like a good alternative. Still, I need to know more about how the caregiver role is verified. My experience has been that there are caregivers that are assigned to patients and who may live with patients, yet the relationship is not one where the patient would agree that all information would be released to them. I feel that the partial information release may also prove effective in those cases, perhaps for a certain amount of time. Prior to discharge, the patient could then sign a full release if the caregiver role is appropriately verified. Verification is often a labor intensive process, and I see that get left out or done in a hurried way. That is why I deem this very important to be done effectively.

I do find family involvement in patient care to be important. That being said, families also need education, many times in a fairly significant way. This supersedes just knowing about meds and a discharge plan. I think that is what makes patients reticent about things. I know that is the case with me, so family involvement needs to be involved with family education, so there needs to be family programs available, as family move up the tier of learning more information, perhaps. 

I will see what is happening in the state of Texas on this issue and report back. 

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The USA is looking to the many opinions as certain States need to clarify the issues of family invovlement and private information. As long as both New York State and Minnesota are moving for the benefits of the consumers that really have family supportive means or in fact a real based peer supportive specialist that will protect thewir dignity as that valid inforamtion is progressed. For most famliied many at certain ages have no living relates others don't bother  and some really care. What both states are doing is using the Rights and privilged information in release forms so treatment can be applied or discharged or admitted. Most States safe guard the identity of a individual while others spread the word on others. I like the ideal that Minnesota is rasing the band  and turning the thwwheels into motion for family awareness of that patient status. What both states are also doing is civil rights protections which all states follow and must keep as confidental as possible. On the other hand without a doubt this essential information creating the right to know laws look like anyone can get this consent just by seeking a request to a doctor. I live in Pennsylvania the Hipaa laws are designed to follow the practice of  protecting the consumer. The Department of Welfare holds the individuals personal information in respect to only the neccessary appointed services they need to use. The HIPAA law forms are at all Doctors, Hospitals, Treatment Centers, and County Behaviorial health operations. Pa. does protect  the people under these standards and for others  threats of gaining that inforamtion illegally is another big issue that sometimes goes denied or overlooked. I have had personal information tooking from a neighbor , 2 houses away from where I live seeking medical inforamtion and what ever she could get  a hold of for her own ignorant fraudalent collections. Truly without a person taking legal action against these intruders you have nothing to hold a private or personal. I do defend by rights as a Mental advocate and I defend the rights of keeping my personal business out of other people noisy conversions. Especially, gossiping neighbors. their are the worse.

At times the HIPAA should make up new rules  but better yet update the existing ones so that training classes to people that have be violated profoundly which a intrusion can and could have the right to puesue a lawyer. HIPAA is to benefit all Young, Old and just in between. 


This question is the toughest challenge yet! My therapist, Lennard, said that the state of Texas clarified which family members could be notified in case the patient turned up missing. My prev ious therapist, Tom, will likely return a call tomorrow. Efforts to reach two inpatient hospitals did not turn out fruitful today. I applaud New York and Minnesota for making HIPPA more family friendly in their states. I am motivated for what our Texas team can pursue initially.


My internet surfing has not yielded the stated answers to "What's happening in your state? to make the communication between family and patient a bit easier? I am eager to get away from the computer, get on the phone--both with outpatient and inpatient providers--and provide some information within the next few days. As far as New York and Minnesota, I feel adamant--carrying over shock from previous essays--that changes need to be made. So for right now, until I can learn consequences of those states'' allowances, I will not comment. Also, I will not comment on my peers'  comments yet.


Family members need access to information about the patient's condition and path to wellness, to support not just the patient's recovery but also the recovery of their family unit. When one member of a family suffers from a mental disorder, chances are the entire family suffers too. See "The Family Afterwards" in the "Big Book" of AA and practically all Conference Approved Literature of Al-Anon. So, that part of the law gets it right in NY and MN.  

However, for unidentified relatives who may abuse, manipulate, or take advantage of family members who are particularly vulnerable because of mood disorders, the part of the law which grants access to information may be wrong if it leads to hyper-control of the patient and blockage of the patient's right to recover at her/his own pace. 

But that's why access needs to be limited and confidentiality maintained, unless the patient indicates in word or deed  the need to harm himself or others. This is a tricky balancing act.  

How does the provider really know the character of the care givers? How are psychiatrists trained to spot bullies among caregivers? Often, for example, the spouse of an identified substance abuser remains depressed for years and might even require hospitalization, if she/he loses her (him)self in their partner's addiction. More families of substance abusers need to know about resources for their recovery too.

From what I have read and heard of CA's MHSA, the implementation has been slow, fraught with administrative overkill and political undertones, in an "Oversight Commission" that rather overlooks those who need its help the most.  Mostly governmental and political appointees, the commission does not speak for those who continue to need help or for those who have yet to receive it. One organization reports that millions of dollars in consultation and PR fees were spent in MHSA funding to make the government look good but failed to serve those the act had intended to serve.


trudy277, Your examination of this intricate issue is well done. Your second question in the fourth paragraph ties in with an idea StacyK and I reflected on. Thank you.


What I do not get is why or how Doctors can get away from not letting you have all your records. Under the HIPPA laws Doctors DO NOT HAVE TO GIVE YOU THEIR PSYCHOTHERPIST NOTES.  You can request them but if they feel you will endanger yourself by seeing they will not let you see them. What?! Who came up with this rule. In Canada they have to give you these notes if you request them. Can someone please tell me why the United States is different? This seems to protect the Doctor not the patient, especially when the patient does not agree with the treatment given or would just like to review these records. These records are no different than regular doctor notes that you get for blood pressure checks or any other health problem. This just seems to protect bad doctors, no wonder many mental health patients stop going to doctors, we get no protection. We should have access to all the records, like Canadians, not just a few.


KelliMorris, The one reason I can see that therapists' notes be kept confidential is that clients' words match more their moods than their message.  Thus, I understand how the family would be misled in reading the notes. Thank you.


@KelliMorris  If you have a friend or family member who is a mental health professional or a doctor have the records sent to them and then you can get the records from that person.  My understanding is that they cannot refuse to send them to another provider.  If you don't have a friend who is a mental health professional or a doctor who would give you the records, then I would have them sent to a friend and call my friend a therapist for the sake of getting the records.  How are they going to know if they're really a therapist or not?  You can win that game.  ;-)