The basic information about HIPAA can be found at the following links:
Here is a link to the latest information about HIPAA as it applies to individuals and family members seeking health information. There is a FAQ link, as well. Specifically, here is a link for family members.
Here is a link for personal representatives.
Here is a link to a FAQ fact sheet for individuals.
Yet, see below for exceptions. Know these exceptions. Know that you have the right to communicate information to your loved one's doctor(s), therapist(s), nutritionist, and psychiatrist, etc. HIPAA does not prevent you from politely calling/contacting them, noting (especially if a Request for Information has not been signed) that you realize they cannot reveal if they are treating your loved one but you are requesting that they listen to what you are offering about your loved one's behavior, their health, and so forth. A best practice on your part would be to tell your loved one you are doing this.
[As many of my readers know, I often comment about articles and/or provide commentary by others when the opportunity arises. A helpful article appeared in the NAMI Advocate but the link seems to have changed. I am currently researching the latest links on this topic.]
By now many families with adult children (or soon to be adult children) who are struggling with a diagnosis of an eating disorder and/or a co-existing mental illness have heard of HIPAA - the Health Insurance Portability and Accountability Act. Undoubtedly, you know about it because any visit to a health care provider by you or a family member includes the requirement that you read and sign a document noting that you understand what the provisions mean. If your loved one is a minor, you will be included in the conversation but not necessarily included in sessions so your loved one's therapist can build a therapeutic alliance or relationship.
In fact, all too often since this Act came into existence health care providers (physicians, therapists, psychiatrists and others) believe they must not communicate at all with members of an adult person's family unless a release has been signed by the patient; and the term "communication" includes the family providing information it feels is critical for the provider to know.
A groundswell of resistance and objection is building. There are situations when HIPAA can be bypassed.
This topic was raised during the recent (March 17, 2019) F.E.A.S.T. of Knowledge conference in New York City and it appears that a task force will be formed to investigate and lobby our legislators about this topic.
Here is the latest update found on the NAMI site (2018) re health information sharing.
The Winter 2014 NAMI Advocate included an article by Stewart Newman, M.D. and G. Ness Matthew Gabay, J.D. titled Understanding HIPAA: Individual Privacy and Family Communication. (pp. 20-21)
The authors provided the news that Rep. Tim Murphy (R-PA) "....introduced a bill in Congress that would make families the legal personal representatives of those they care for, so that providers are free to communicate with or without [italics mine] a release of information." (p. 20)
All to often, as I and many others have discovered, many providers refuse to communicate with family members even if the conditions are appropriate. The authors refer to this as a "culture of silence." They state, and I emphasize in bold, "engaging the family is a therapeutic best practice."
Providers instead think they cannot and should not communicate at all with family members. This needs to change and in some cases is incorrect already.
What those of us with family members struggling with eating disorders or mental illness have come to understand is that the adult with a biological brain disorder all too often isolates, will not reveal that they are suffering (to the point of having suicidal thoughts), and sometimes ultimately in despair will try or succeed to take their own life or lives of others.
Those of us with ill adult family members often are faced with an individual who refuses a recommendation that they seek inpatient or residential care. I addressed the concept of an outpatient "team" in a previous post and provide a link here. The bottom line, though, is that all the team members must communicate to be effective providers of care for their client.
And again, "engaging the family is a therapeutic best practice."
The authors quote Tom Insel, Director of the National Institutes of Mental Health - "If you look at those things that help to build resilience ... one of the best is simply getting families involved." Indeed, the National Alliance on Mental Illness (we have a NAMI chapter here in Tucson and many communities do as well), has been a long-time supporter of family involvement as evidenced by Family to Family, Back to Basics and other programs offered. I attended the Family to Family program and "graduated" with a huge amount of information to help me advocate for my loved one and understand her illness and the illnesses of others better. Check with your local chapter if it offers this class.
So, why is it so darned difficult to break through the walls?
In response to that question, NAMI Oregon - a fantastically active state organization if one looks through all the achievements listed on its website created a Checklist for Parents and Families of People Living With Mental Illness to Assist in Communicating with Treatment Providers. Here is the link but I notice that it does not have an https classification. You can access it separately (I just did).
However, to continue this discussion: There are three sections of the checklist for parents and families and each asks a series of questions and issues a family must address and find the answers for. My comments are in brackets.
For example, the first section begins with "For all persons with mental health issues, families should request the following (5) questions. One is "Has the provider reviewed the records of previous mental health providers and communicated with all others who are involved with the persons' treatment and care (e.g. therapist, family physician, case manager.)"?
[This question is terribly important because at least in our family's experience, records are kept by the previous therapist or doctor or treatment center and are not released unless there is a signed release by the patient. Often family members automatically assume that records go along with the patient - not so. Your family member must sign a release.]
The second section begins, "Where an elevated risk of suicide is identified in persons involved in treatment, families have a compelling interest to learn the following" and an example from the list of 6 questions is, "What is the provider's evaluation of suicide risk in this case? What are the particular warning signs (not the same as risk factors) for suicide in this person's situation? What steps should the family take if they see these factors occurring (e.g., taking the person to the hospital for reassessment)? You may wish to ask the provider to help create a plan to monitor and support the family member. What protective factors exist, and how can these be expanded or enhanced for this person?"
[The family members have an absolute right to be certain that their adult child is receiving the best possible care and is not falling through the cracks. If the provider does not know the particular warning signs in your loved one, insist that they find out.]
The third section begins, "When the person is at a university or similar setting, the family may wish to ask the education professionals:" and an example from the list of 2 items is, "What systems are in place to support students living with mental illness and to help them avoid self-harm? ...Are the health service and/or counseling services on call 24/7, and if not, what are their hours? Is there a 24-hour number to call in case of emergency?"
[The same questions might apply to an individual who is living in a therapeutic community or a group home.]
In closing, as the authors state in their article and I have repeated many times in posts on this blog, "Whether the individual agrees or not, nothing [should] prohibit a family member from speaking with the provider to share information, and nothing [should] prevent the provider from listening."
As was stated by a mother at the F.E.A.S.T. conference in Dallas (2014), our task is to communicate in a way that opens doors and ears for too many providers still do not understand eating disorders. We can change that, one step at a time
in August 4, 2015: A bipartisan move by Senators Chris Murphy (D-CT) and Bill Cassidy (R-LA) to introduce the Mental Health Reform Act. Among the important provisions is to "clarify HIPAA to ensure that families of people with severe mental illness have access to critical information concerning their loved ones."
Update November 5, 2015: I learned in conversation that a facility can reveal whether or not a family member has been admitted to the hospital or to the ER. There are guidelines provided on the HIPAA website. Here's one that may be of use to readers:
Update March 29, 2016: USA Today published an article on this controversy. You can read it here.