My loved one is receiving mental health treatment but I can’t get any information because of HIPAA. What can I do?

Being hospitalized for a mental illness can be a challenging experience for both the hospitalized individual and the loved one who is trying to help them. Restrictions put in place to protect the person receiving treatment can include locked doors, clothing and gift rules, restrictive visiting hours, and limits on where patients can go.Phones are located only in common areas and their use is sometimes restricted. These rules are in place to help ensure the safety of the patient and others.

Due to privacy laws and treatment schedules, families may have a difficult time reaching their loved one by phone or visiting while their loved one is hospitalized. Many hospitals require the patient to sign a privacy release to allow family members or friends to contact them while hospitalized. Without a signed release, the hospital/facility cannot confirm if your loved one is even admitted, much less provide specific details on the status of their treatment. 

You can ask to be connected to the unit and depending on the hospital, your call may be transferred to the patient phone area or the nursing desk. Be polite but assertive and request that a message be taken to your loved one.

During the hospital stay, it’s important that your loved one connects with people from their community who can provide support and reassurance. Encourage your loved one to allow calls or visits from friends, neighbors, advocates, specific family members or their spiritual leader. 

Visiting hours are often limited to make time for therapy sessions and other treatment.  Check with the hospital about visiting times and any age restrictions they may have for visitors.  If you are the parent or guardian of someone younger than 18, you generally have access to medical records and input in treatment decisions.

What HIPAA Means for Mental Illness

It is always preferable for your adult family member to share information with you. However, there are exceptions under federal law (HIPAA - Health Insurance Portability and Accountability Act) that permit providers to release information to you without consent. You may wish to begin by consulting NAMI’s blog Understanding What HIPAA Means for Mental Illness that offers basic information about HIPAA and caregivers’ rights to the medical information of their loved one. We hope the following answers to Frequently Asked Questions will be of help in clarifying some of the issues concerning the release of information.

Does HIPAA require consent for disclosure of information to family members, friends or others involved in care?

In general, yes.  If a person has the capacity to make health care decisions, they must consent or at least not object to the disclosure of information to family, friends, or others involved in their care.  

Does “consent” to the disclosure of information require that the consent be in writing and signed by the individual who is the subject of the information?

Written consent is not required.  HIPAA merely requires that the individual be told about the request for information and agrees or does not object to the disclosure of the information.  Unfortunately, this is not well understood by many treatment providers who assume that written consent is required for every disclosure of information to family, friends or others involved in care. 

What if the person who is the subject of the information is not present to agree or object?

If a person is not present to agree or object to the disclosure of information, a health care provider may share information with family, friends, or others involved in the person’s care if the provider determines, based on professional judgment, that doing so is in the best interests of the person.  However, this is often not well understood by health and mental health providers who assume that absent written consent, they may not disclose any information.

What if the person who is the subject of the information does not have capacity to make decisions about the disclosure of information?

If a treatment provider believes, based on their professional judgment, that a person does not have capacity to make decisions about the disclosure of information and further believes that disclosure to family, friends, or others involved in care is in the best interests of the person, they may disclose the information.  No formal determination of lack of competence or capacity by a court is required.  

Are hospitals and other health providers permitted to inform family members about a person’s location in the facility and their general condition?

Yes, HIPAA permits providers to maintain directories with general information about patients – name, location in the facility, and general health condition that does not disclose specific medical information.   

Can a health or mental health provider accept information from family members or caregivers about a person’s mental health status or past treatment?

Yes.  HIPAA allows treatment providers to accept information from family members and others with knowledge of the person’s mental health or health condition.  No consent is required by the individual who is the subject of the information.  

Are there ways for persons with mental health conditions to communicate in advance their preferences about who they consent to have information shared with?

Yes, individuals can communicate their preferences regarding future mental health care, including information sharing in several ways.   

One way is through a Psychiatric Advance Directive (PAD).  A PAD is a document on which a person who is competent (has capacity) may provide instructions about their preferences regarding future mental health care, including who may receive information about their care.  Twenty-five states currently have law specifically permitting PADs.  These laws also have established forms for writing PADs which can be downloaded.  You can find more information about which states permit PADs and how to write these documents at www.nrc-pad.org.

Even in states that do not have laws specifically authorizing PADs, most states have laws that authorize living wills.  These laws usually also allow individuals to provide instructions regarding mental health care, including those they authorize to receive information about their care. You may find out what the requirements are in your state at www.nrc-pad.org.

Finally, individuals who choose to write their preferences in advance should both carry these documents on their person and provide copies to others they trust, including the person they have authorized to receive information about their care as well as their mental health and/or health care providers.   

Can a person who has written a PAD change or reject (revoke) it during a mental health crisis or when they are hospitalized?

It depends.  Most states do not permit an individual to revoke their PAD during periods when they are not competent.  But, if there has been no finding that the person lacks competence/capacity, they may be permitted to revoke it.   You can find out more about the requirements in your state at www.nrc-pad.org.

What if my son or daughter experiences a mental health crisis while in college? Can the college communicate with me about their condition and treatment?

Health or mental health treatment provided by a college or university is covered by HIPAA, but also by another federal law called the Family Educational and Privacy Rights Act (FERPA).  This law protects the privacy of a student’s educational records.  In general, FERPA prohibits colleges from sharing information from student records with parents. However, there are exceptions, including:

When the student authorizes the sharing of information in writing;
When the parents document that they claim the student as a tax dependent; or
In health or safety emergencies.

As with HIPAA, students should be encouraged to document in writing in advance who they authorize the college to communicate with in health emergencies.   For more information about FERPA, see the guide developed by NAMI and the JED Foundation entitled Starting the Conversation: College and Your Mental Health.

In addition to HIPAA, do I need to be knowledgeable about my own state’s health privacy laws?

HIPAA establishes minimum standards for protecting the privacy of health information.  State laws that are more protective of privacy therefore supersede the requirements in HIPAA.  However, in most states, HIPAA is the prevailing standard for health privacy.  

Getting a Signed Authorization For Release of Medical Information

For best results, ask your loved one to sign an authorization for release of this medical information to you during the emergency evaluation or admission process. If they refuse, ask staff to continue asking them throughout treatment in hopes that they will change their mind as their condition improves. 

If a release has been signed, family members should request to attend a treatment team meeting that usually involves a social worker, nurse, and psychiatrist. Ask the team for the following:

Diagnosis and what the diagnosis means 
Course of the illness and its prognosis 
Treatment plan 
Symptoms causing the most concern, what they indicate and how they’re being monitored 
Medications prescribed, why these particular medicines have been selected, the dosage, the expected response and potential side effects 
If the diagnosis, medications, and treatment plan have been discussed with your loved one, and the reasoning behind those decisions and if not, explain the reasoning 
Pamphlets and book recommendations that explain the illness(es) being treated 
How often you can meet with the treatment team to discuss progress 
Whom you can contact for information between meetings 
The aftercare plan once your family member has been discharged from the facility, and what to do if your loved one leaves against medical advice

At the treatment team meeting, you can describe what factors you think contributed to your loved one’s crisis, any particular stressors, and anything else you think might be helpful for effective treatment including challenges with adherence to treatment in the past. It’s also helpful for you to suggest the most appropriate living situation after their discharge.  Be honest and don’t apologize if living with you isn’t an option. 

Additional Resources

To learn more about exceptions to HIPAA, see the U.S. Department of Health and Human Services guide  HIPAA Privacy Rule and Sharing Information Related to Mental Health. You can find more information on health information privacy related to mental and behavioral health here and on the following sites: Mental Health America: "HIPAA - What Are Caregivers Rights?" and "Treatment Advocacy Center "HIPAA". More information specific to caregivers can be found on the HIPAA for Caregivers website. They provide clear, straightforward, and accurate information on HIPAA, with a specific focus on when it is appropriate to communicate with caregivers without violating the privacy rights of the individual in treatment.

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