What about HIPAA and How to Overcome Barriers

In the process of being revised.  3/29/19

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.

Eating Disorders - Pulling Knowledge Together - Carrie Arnold, Kathryn Hansen and Marya Hornbacher

Several people who’ve been in recovery for quite some time have thought and written about eating disorders (and co-morbidities), including me (here in my blog), from a variety of perspectives and have taken the time to consider and then share what we’ve learned that apparently made a difference.  

For the purposes of this post,  I’m specifically thinking of Carrie Arnold, Kathryn Hansen, and Marya Hornbacher. 

Kathryn Hansen, Carrie Arnold and now Marya Hornbacher with her work in progress have taken/are taking this discussion to the next level.  I know there are many others who have written memoirs on this subject; yet I am focusing on these women because their work is taking our knowledge of eating disorders to the next phase of understanding what's going on in our brains and possibly why; how we think and why.  They are/will be sharing their knowledge in an easy, conversational style to help those of us who are not scientists understand scientific concepts and developments.

Their work is important because until as recently as 2010, prominent people in the field of eating disorders were lamenting that new knowledge about eating disorders could take years and years to reach the eyes and ears of those who can help make a difference, particularly in residential treatment centers, in doctors' and therapists' offices and in homes where parents and other family members are employing the latest thinking and techniques to help their family members get going on recovery.  

The electronic media is serving to speed up this process.

Few are familiar with Kathryn Hansen’s book Brain Over Binge, Camellia Publishing, 2011, possibly because of the concept of the “tipping point" made so popular by Malcolm Gladwell in his book,  The Tipping Point: How Little Things Can Make a Big Difference first published by Little Brown in 2000.   Since she has now developed a workbook to accompany the book, perhaps her ideas are catching on.   Kathryn's work preceded much of the literature about the brain and eating disorders, some of which I learned in a course I took here at the University of Arizona and wrote about here on my blog.  Kathryn published her book in 2011.  Since then information has started to tumble forth and people, who are coming to understand better, are paying attention and advocating for change through legislation.  After I read her book, I wrote something of a review incorporating additional information and examined what she wrote here.   From the book cover, I pull the following:

After six years of chronic binging and purging, Kathryn Hansen stopped her eating disorder independently and abruptly, using one tool and one tool only:  the power of her own brain.  In Brain over Binge, Kathryn traces the course of her condition and describes in detail her unconventional approach to recovery.  In the process, she offers a much-needed alternative perspective to the canvas of eating disorder literature to help others struggling with any form of binge eating.

The mainstream view of bulimia holds that is is a disease that manifests as a means of coping with deep underlying emotional problems.  But the author persuasively argues that in her case, this philosophy actually encouraged more binge eating.  For her, it really was about the food.  Kathryn's candid account cuts through the confusion she experienced in traditional therapy and simplifies both the origins of bulimia and its cure in a fresh, intriguing, and always clear voice.

Brain over Binge is a brave book that will help many by delivering an informed and inspiring message of free will, self-reliance, and self control.

She provides more information about her personal recovery process at her website here.  Note again that her book was published in 2011 and since that time much, much more has been revealed about the brain and genetics.  However, her book offers a powerful perspective on how important and effective a change in behavior can be.

In summary, if you haven't found a way to overcome your bulimia or help your loved one overcome bulimia, take a look at this post here on my blog:  

Many people are hailing Carrie Arnold’s book, Decoding Anorexia: How Breakthroughs in Science Offer Hope for Eating Disorders, Routledge, 2013, as a major contribution to the understanding of eating disorders.

Following are two excerpts from the book's cover.  The first is written by Walter Kaye, MD, Professor of Psychology and Director, University of California, San Diego, Eating Disorder Research and Treatment Program.  To better understand the import of what he has to say about Carrie Arnold's achievement, you can read more about him and his outstanding dedication to his work here.   He writes, 

Carrie Arnold has done an outstanding job of translating complex and difficult research findings into understandable concepts.  This book should be an essential guide for individuals with eating disorders and their families who would like to know more about how brain processes contribute to eating disorder symptoms. 

  

 The second excerpt summarizes what one learns when one reads her book:

Decoding Anorexia is the first and only book to explain anorexia nervosa from a biological point of view.  Its clear, user-friendly descriptions of the genetics and neuroscience behind the disorder are paired with first person descriptions and personal narratives of what biological differences mean to sufferers.  Author Carrie Arnold, a trained scientist, science writer, and past sufferer of anorexia, speaks with clinicians, researchers, parents, other family members, and sufferers about the factors that make one vulnerable to anorexia, the neurochemistry behind the call of starvation, and why it's so hard to leave anorexia behind.  She also addresses how environment is still important and influences behaviors, the characteristics of people at high risk for developing anorexia nervosa, why anorexics find starvation 'rewarding', and why denial is such a salient feature, and how sufferers can overcome it.  

Note for the purposes of what I'm focusing on here: "how sufferers can overcome it."

Jennie Schaefer has written two of the books that are on my shelf:  Life Without Ed: How One Woman Declared Independence from Her Eating Disorder and How You Can Too (2004) and Goodbye Ed, Hello Me: Recover from Your Eating Disorder and Fall in Love with Life (2009).  From the book jacket review, 

Ultimately her two books reveal [again, the changing the behavior theme] that being fully recovered is not just about breaking free from destructive behaviors with food and having a healthy relationship with your body; it also means finding joy and peace in your life."  

I refer to Jennie Schaefer and her groundbreaking books that have helped countless people get on the path to recovery, because Schaefer also maintains a blog and has recently written that she spent quite a bit of time talking with author Marya Hornbacher.  The culmination of that conversation is Schaefer's three fascinating posts detailing what Hornbacher has been thinking since the publication of her first book, Wasted. 

To step back for a moment, Marya Hornbacher first came to everyone’s including my and my family member's attention when she published  Wasted:  A Memoir of Anorexia and Bulimia [1998 by Harper Collins].  The paperback followed shortly after that and arrived in our hands sometime in 2005 when my family member's therapist gave the book to her to read.  It's probably the most candid book I've ever read about eating disorders and yet the book was also hugely educational and helpful to me to try to comprehend the depths of my family member's profound illness that was so much stronger than mine had ever been.    I still highly recommend the book but always provide the caveat that it's not easy reading.

Marya Hornbacher went on to write Madness: A Bipolar Life; another candid memoir that revealed her struggles with the co-moribidity that  interfered with her recovery and her life.  The book includes helpful facts, websites, and contacts regarding the diagnosis of bipolar disorder.

Now, according to the discussion she had with Schaefer, Hornbacher will be considering, among other things, "unsticking" and the importance of changing one’s behavior (one habit) and replacing it with another behavior in order to get into recovery.   Like Arnold, Hornbacher indicates in the interview that she will be spending quite a bit of time researching  material and working with people in order to write this next book.  

I look forward to the publication of her book and in the meantime I refer you to Jennie Schaefer's blog and these three links:
http://www.jennischaefer.com/blog/overcoming-adversity/wasted-full-recovery/
http://www.jennischaefer.com/blog/overcoming-adversity/take-medication-letting-go-mary-hornbacher/
http://www.jennischaefer.com/blog/overcoming-adversity/marya-strategies-unsticking-part-3-3/

Progress re Treatment of Eating Disorders?

[So excited to note here at the top of this post the March Against ED on September 30, 2014 in Washington, DC.  This event has united so many organizations intent on bringing attention to this biologically based illness.  For more information go to this link.   AND, watch the video!! ]

The September 2014 issue of the International Journal of Eating Disorders (Volume 47, Issue 6) arrived in my mailbox yesterday.  As usual, I quickly browsed the contents.  I was so struck by the similarity of themes - meaning much work needs to be done - between the quote I provided in 2010 after attending the NEDA conference, and the Abstract of the first article, "The Therapeutic Process in Psychological Treatments for Eating Disorders: A Systematic Review" by Anne Brauhardt, Martina de Swaan, and Anja Hilbert, especially the Discussion, that I highlighted some of the information in the latter as another lead-in quote to my blog.

Much progress has been made in the understanding of the importance of Family Based Treatment (FBT), of the care and nutrition needs early on in treatment of the person with the eating disorder, of the integral part family dynamics (by family I mean the primary social environment of the person) plays as well as of the role of one's environment and especially of genetics and the understanding of the workings/treatment of the brain.

Yet because eating disorders remain one of the most difficult to treat of all brain based illnesses, so much more work needs to be done and all involved in the field including the organizations supporting the dissemination of information need to work together to help those diagnosed with this range of illnesses.  Currently, I believe there remains too much ignorance as well as an attitude of "this way is better than that way" and the only way the community is going to get around these hurdles is by keeping an open mind as well as staying current with the literature and accepting that perhaps their in many cases limited and self-serving approach is detrimental to helping people get into recovery.

I realize my statements may raise hackles yet I continue to note that the agendas (speakers and their topics) of some sessions still seem to ignore - discount? - what is happening in other areas.  I hope this situation will change.  I have added the blog created by Averil Hart's family to emphasize the importance of knowledge and change in the treatment of eating disorders.

Meanwhile, as I've noted in my header, I will be slowly reorganizing my blog and updating where I can to provide a useful resource for parents, especially parents of adults with eating disorders.  I am encouraged to see lately that more emphasis is being placed on how to treat adults and therefore what might work to help them become motivated to change - a wonderful and important development.

Asking for Help - How About a Recovery Coach?

A year ago last January, I wrote a post titled "Asking for Help" and remarked that before release, every single person with an eating disorder who has been receiving treatment in an eating disorder program ranging from inpatient to residential to outpatient needs to learn how to ask for help before going out on her/his own.  I noted the reasons why I thought so and you can read the entire post here.

Fast forward to yesterday's issue of the Sunday New York Times (July 13, 2014) and included is an article in the Sunday Styles section (p. 1) by Marisa Fox titled, "A Guide's Sobering Effect:  Affluent mothers are hiring coaches to help them stay clean in battling their addictions."  I have provided a link to the article here.  I don't know how long the link will be viable, however.

My first thought was what a great idea!  My next thought was, why can't this service (I would call it a profession) apply to anyone who needs to stay clean (whatever that means) or in my terms get into recovery?  My third question was, how expensive does this need to be?  And my fourth question was, could this service profession be covered by one's health insurance policy?  Of course lots of questions (and answers) could pour forth, but the fact is, a recovery coach skilled in the field of addictions and similar disorders the behavior of which becomes entrenched in brain pathways is needed for all sorts of reasons, including eating disorders, for example bulimia.

Fox refers to these coaches as "sobriety coaches, ....sober companions and recovery therapists.  Her article lists/points out various facts that many of us who have family members or friends recognize easily, especially for those of us, like me, who have a family member whose disease has been ongoing for more than 25 years.  For example, one person in recovery remarked, "....addiction is a disease of isolation.  I would have loved to have someone come over and help me not get drunk."

And, as one of those who utilized a coach noted, "I found it hard to function in the real world in a sober capacity without the protective cocoon of a rehab....It's like reading a book on how to swim, and then jumping into the ocean.  Having a companion with me at all times allowed me to transition, so I didn't drown."  She went on to say, "I had been on chemicals for more than thirty years....It takes a while for the brain to normalize.

Scientific research is revealing the process of recovery from an eating disorder takes a long time, particularly for the brain and particularly for those who have been entrenched for quite awhile.

So, I put this idea out there again with the NYT article as a backdrop.  Within the last year I did contact an agency and arranged, with my family member's consent, for a person to serve somewhat in this capacity but more like a companion than a coach.  My family member ultimately rejected the idea because apparently she is still under the control of her eating disorder and unable to change her behavior(s).

Sometimes, as much as a parent and especially a parent of an adult would like to completely fill the role of getting their family member into recovery, the role needs to belong to some other person who appears more neutral (this idea has been the subject of many writers).

The idea of an actual recovery coach, sober companion and/or recovery therapist takes this a step further and I am certain could be utilized to set up a program for those people who desperately want to get rid of behaviors that are undermining their ability to live a better life.