The Second Annual Mom's (Mothers and Others) March, October 27, 2015

This year has been extremely difficult not only for my loved one but also for the members of the family (and our friends who have stood by us, thank goodness!).  I've repeatedly reached the point of saying, "I've done all I can" and then somehow energy wells up from someplace and I find that I can do a bit more.  Meanwhile I also have heard  people say, "you've done enough." Or, worse, "[provider] does not see any possibility for rehabilitation."  I disagree.

Earlier this year I drove up to Phoenix to witness Arizona State Senator Katie Hobbs bring attention to the lack of coverage for eating disorders here.  You can read about Senate Resolution 1003 and her efforts here.

Following the trip, I continued to pay attention what was going on in Washington, DC and elsewhere but had little energy to do more than that because things  got really grim.

Then the Eating Disorders Coalition announced through its website and press releases that the Anna Westin Act had gained bi-partisan support in both the U.S. House and Senate.  Not only that, but Annie Seal's earlier work in Missouri  aided now by many people also made the Arizona Daily Star here in Tucson!  You cannot imagine how startled I was to see the headline "Mo. law affects insurance rules on eating disorders" (6/29/2015 p A1)  on the front page!!!  about eating disorders!!!
A revolution!!!!

Fast forward and prompted by my husband's friends at Georgia Tech who this summer extended an invitation to us to join them for Homecoming Weekend in Atlanta, we decided to make a grand trip out of the entire situation.  He attended meetings in Washington, DC the week of October 19 and flew down to Atlanta on Friday.  I flew from Tucson on Friday to join him and them over the weekend of October 23-25, and then while he returned home, I flew on up to Washington, DC to attend the Mom's March on Tuesday, October 27, and to lobby on October 28.

Tuesday morning, my FitBit told me I walked about 6.5 miles as I made my way from my perfectly situated (thanks, Laura Collins) hotel to the Lincoln Memorial and points in between.  I discovered a wonderful little grotto with a fountain on the grounds of the Capitol Building, missed a great shot of the Washington Monument framed by trees displaying their fall foliage (because I figured I would get a better shot closer only to discover that the mall is being torn up by some sort of construction), walked up the steps of the Lincoln Memorial to again read Lincoln's speech, and took in a brief visit to the Vietnam Memorial (I visited this many years ago) before heading back and north towards the Busboys and Poets restaurant to enjoy lunch and a presentation by Dr. Mark Warren put on by F.E.A.S.T.  And, to say hi to Laura Collins and Leah Dean, among others and to meet Heidrun Dickson (with whom I was fortunate to have dinner Wednesday evening) and Jennifer D. T. Ouellette.

Following lunch, I trekked along with several people including Facebook friend Sarah H. W. who was pushing her grandchild in a stroller (so happy to meet her after all these years) back to the west lawn of the Capitol to be greeted by this scene of those gathering for the march (really, a rally).

As had several others already, I registered, created a rather plain poster noting that I was marching for my daughter, filled out a tag attached to a beautiful yellow rose that would be delivered to an Arizona congressperson, met and said hello to Kathleen and her mother, to Becky Henry, to Kitty Westin (who came to my rescue years ago by phone when one of her friends, who happened to be a nurse in a local hospital's ER gave me Kitty's personal number so I could call her - such support!!!!  I cannot begin to tell you how much that phone conversation meant to me), a few others and then found a place to sit and watch the proceedings.

A few weeks ago I bought and read cover to cover Patrick Kennedy's book, A Common Struggle.  If you haven't read it yet, I encourage you to do so.  I learned so much about the political process of getting legislation passed!  So, I greatly anticipated seeing him and hearing his remarks to us as he was the keynote speaker!!!  How exciting to have him on board with our efforts to gain attention to the need for better treatment and coverage of eating disorders!  Here he is -

Many others spoke, as well, including Kitty Westin, Annie Seal, Debra Schlesinger, Becky Henry, Kathleen MacDonald, Cherie Monarch, Johanna Kandel and the videographer who is creating a wonderful film.  I hope a reader here will help me identify her.  I know I've left others off this list and I apologise.  I did not see a program.  The event was wonderful!

Here's a terrific recap.  Those in green shirts have lost a family member to an Eating Disorder:

I encourage you, if you have not attended - or even if you have - to come next year!!!!

What Is Being Done for Those Whose Eating Disorders are Entrenched?

[I originally changed the title of this to Part 1 because I've been adding material to this piece after I published it to my blog.  However, rather than create Part 2 to discuss what I have learned, am learning, hope to learn about the treatment of those with entrenched eating disorders, I decided to post a separate blog report about the Third Annual Conference of the California San Diego Eating Disorder Center that was held in La Jolla, Callifornia on February 25-28, 2016.  Access the first in a series of eventually three parts here.]

Much important and so necessary attention has been directed towards diagnosis and treatment of adolescents and even youngsters under the age of 10.  I'm a huge supporter of the work being done by so many around the country to get legislation passed nationally and state by state to make certain that eating disorders are legally recognized illnesses the treatment of which should be covered by health insurance to the same extent as other illnesses such as cancer, tuberculosis, multiple sclerosis, arthritis and so forth - including, for example, on-going visits and tune-ups.  I've tried to be active locally in our state, as well. And, of course, I've continued with my blog although I, too, have struggled with burnout. Bottom line:  the sooner the illness is addressed, the better.

Having an adult family member with a long term and entrenched eating disorder has led me on a protracted search to find help for her and to call attention to those who work with her that a different more comprehensive approach is needed.  Sometimes I've felt like I'm hitting my head against a wall because so often her treatment providers have turned to the list of her co-morbidities and tried to address those independently because over time nothing else has seemed to work.  These days attention is being paid, importantly, to her state of physical health and status; however, not much other progress is being made. 

However, as I've also noted in posts on my blog, how to approach and treat an adult with a newly diagnosed or an ongoing eating disorder is not well understood.  I've highlighted the relevant articles in the first subject in my site's Index - "Adult eating disorders and recovery tools" that the reader will find on the right side of my website.   I've offered suggestions of some things that have seemed to make a difference like the establishment of a team and the inclusion of a recovery coach.  I've noted that any patient and especially an adult in outpatient treatment must have a cohesive treatment team; not one that is fragmented.  The question of how to therapeutically approach the treatment of an adult with an entrenched eating disorder accompanied by other diagnoses, especially by what is called Borderline Personality Disorder (a misnomer and more appropriately defined as emotional dysregulation), remains elusive.  

Currently I am reading The Biology of Desire - Why Addiction Is Not A Disease by Marc Lewis, PhD (Public Affairs, a member of the Perseus Books Group, 2015).  As readers of my blog know, I believe (speaking as one who recovered from a 15 year bout with bulimia/anorexia) that eating disorders are brain disorders.  From that basic point I think that it is the thought patterns and therefore behaviors associated with eating disorders that become addictions and from there, as discussed by Dr. Lewis in his book, compulsions. I believe as Dr. Lewis does that there is hope.  One possibility is that which he discusses on pp 214-5 - involving Reach Out for Recovery and the city of Birmingham in the UK - effecting change by having resources at the ready and known to the person (and/or his/her family) with an addiction when the person finally has had enough and wants to change.   He refers to this as a "developmental approach."  He notes on page 213, and again I refer back to Kathryn Hansen's book Brain Over Binge, "....What will work best is whatever is available when the synaptic avenues of desire make contact with brain regions responsible for prospective change....Quitting requires a merger, perhaps a collision, between desire and perspective - again, what fires together wires together...."  Whether this experiment in the UK can be applied to those with eating disorders is another question. Incorporating and involving  community resources such as Smart Recovery, AA, and eating disorder support groups or even local chapters of eating disorders associations would be a good first step. 

Recently, I was deeply moved to read the first in a series of articles written by Jeanene Harlick.  These past few days, because of a discussion around an article that struck me as as much a statement about how eating disorders affect family members as it is about how to respond to as well as how to find appropriate treatment for those diagnosed, I've gone to Ms. Harlick's website:  www.adisorderedworld.com  to re-read her first piece and to read the second, as well.

Her first piece, "The Eating Disorders "Residential Treatment Industrial Complex": Harm or Help? Part 1 of an Investigative Series," not only recounts her experiences through the years in treatment but also, and so importantly,  underscores the fact that treatment for older individuals whose eating disorders are entrenched is terribly lacking.   I've read her first piece twice now and the similarities to my family member's experiences and accounts are truly heartbreaking although my family member has often said that certain aspects of her treatment like someone sitting with her while eating and monitoring her after eating were very important to help her break the ferocity of her bulimia.  The term non-compliant has been especially jarring knowing how much my family member's self has wanted recovery.

At the same time, Ms. Harlick's article is encouraging because through interviews with some of the top researchers in the field, she reveals that they are starting to turn their attention to this thorny issue.  I am particularly encouraged by the knowledge that Dr. Cynthia Bulik is investigating other approaches similar to what has seemed to work better for my own family member - person-centered or an individual approach to treatment.   However, finding someone with the patience to continue to work with my family member has been difficult.  At one point, a couple of years ago, almost her entire team quit on her.  She was shocked and demoralized.  Fortunately, three members of that original team have stood by her but the question remains, how to assist her into recovery she seeks when the illness within her rejects help offered?

Ms. Harlick also draws attention in her first piece to the Residential Eating Disorders Consortium and the Commission on Accreditation of Rehabilitation Facilities (CARF).  As she notes, "CARF eating disorder accreditation requires, among other things, that programs provide only evidence-based care - including, for adults, the forms of therapy proven effective in Touyz et al studies that employ staff with higher levels of specialty training and experience, and pay greater attention to clients' unique needs and history as well as socio-economic circumstances, career goals and quality of life."  [Note that the link to the article by Stephen Touyz and Phillipa Hay indicates "Open Access."  I hope this status continues for this piece is incredibly important.]  The guidelines also call for "....more cooperative, collaborative treatment plans."  She also notes that "....so far only six programs have obtained the CARF eating disorder accreditation."  This is encouraging, actually.

She closes with personal comments that I have heard from my family member, too.  I know that my family member craves recovery because she continues to say so.  She also gets hungry and she also tries to eat but then purges when she is overwhelmed by how she feels inside.    My family member also dwells on so many of what others have called her failures.  As she has commented, "...why try again when I know I will fail?" I believe it's not the individual who has failed, but the treatment approach. 

Ms. Harlick's second article, "Buyer Beware - Behind the Smoke and Mirrors: How Residential Treatment is Being Sold as 'First-Line' Treatment for Severe Eating Disorders Despite Research Backing; The Problematic Variation in State Licensing Standards and Oversight Across States; and Whether Accreditation is Really a Remedy to the Lack of Quality Control" takes a look at, among the issues listed in the title, one of the points (re data) among the five raised by Dr. Russell Marx in his opening remarks at the start of the 2010 NEDA Conference I attended in New York City.  

Regarding the issue of data and data standards, these  are wrestled with in many fields globally.  I am somewhat familiar with the issue of data standards because of my husband's work at the Critical Path Institute.  I refer you to, for example, the Austin-based outfit CDISC  with which C-Path collaborates.   Collection of accurate data and the development of uniform data standards is definitely needed within the eating disorders treatment world.

However, much progress is being made and as I heard years ago during a presentation, it's important to "keep your eyes on the prize."     As Ms. Harlick points out in her second essay, the population of those diagnosed with eating disorders is small; those who reach partial recovery is smaller and of those who are entrenched is smaller still.    I believe it's critically important to ferret out what works from what doesn't and to continue to push for early diagnosis and treatment so that fewer and fewer individuals (few already) become entrenched and more go on to recovery earlier and solidly.  One of the ways we can work together to make this happen is through legislation like that mentioned in my previous post.

There will be those naysayers who will latch on to anything that will defeat this legislation.  We must work together to publicize what does work so that anyone diagnosed can receive early diagnosis and treatment that is covered by insurance.

Update [7/2015] re Eating Disorder Legislation Nationwide including another visit to the Arizona Legislature on February 28, 2015

Updated March 2016

Two years ago on April 17, 2013, I traveled to Phoenix to attend a rally and to speak to legislators during a briefing sponsored by Arizona State Senator Katie Hobbs.   I wrote about my trip here.  

Senator Hobbs, with the assistance of the National Eating Disorder Association's STAR Program Manager Kerry Dolan and STAR advocate Angela Bernhardt, began work on legislation that Senator Hobbs presented to the State Legislature during the 2014-15 session.  The  proposed legislation was referred to the  Health and Human Services Committee, Senator Nancy Barto as chairperson, where it died for lack of support.

A progress report that appeared in  the Phoenix area newspaper The Foothills Focus on February 25, 2015, and written by Lauren Potter can be accessed here.    Among the points noted,

 "....Hobbs’  proposed bill SB1427 ... propose[d] an eating disorders study committee be established to assess the impact of expanding the insurance coverage of eating disorder-related treatments. The committee would also study the demographics and prevalence of eating disorders in Arizona, as well as their economic impacts."


Rather than let the matter drop, Senator Hobbs and Senator Catherine Miranda presented a resolution - Senate Resolution 1003 -  to the assembled legislators in session on February 28, 2015.  Angela Bernhardt and I were introduced to those present.   The resolution was voted upon unanimously and accepted.  By clicking on the words "Senate Resolution 1003", the reader can access the text of the resolution.  The National Eating Disorder Association (NEDA) issued a press release about the resolution along with activities in other states including Ohio (particularly the cities of Cincinnatti and Cleveland) and Utah.  The NEDA press release can be found here.

Many of us are hopeful that legislation will be proposed again this next year.  Work is needed to develop relationships and understanding with those who have the power to advance the legislation beyond the subcommittee. If a reader knows of a Republican legislator who has expressed interest in this legislation or even has a personal connection with someone who has an eating disorder, please pass along the information.

Meanwhile, many advocates were thrilled to learn that in June, the State of Missouri passed legislation - SB 145 - that that requires coverage by insurance companies for the treatment of eating disorders. More information can be gained at the Missouri Eating Disorders Association advocacy website.  Here is the text of SB 145.  

In addition, on the national level, the Anna Westin Act - HR 2515 - has been introduced in the House thanks to the co-sponsorship by Congresswoman Ileana Ros-Lehtinen (R-FL) and Congressman Ted Deutch (D-FL).  The Eating Disorder Coalition has continued to provide updates on the progress of this Act.  Today's update includes the news that former Congressmen Patrick Kennedy and Jim Ramstad expressed intent to include eating disorders and residential treatment in the Mental Health Parity.  Here is the link to their letter of support directed to the co-sponsors.    And, here is the text of HR 2515.  

Update:   The Eating Disorder Coalition announced today (7/28/2015) that Senator Kelly Ayotte (Rep, NH) has been joined by Senator Tammy Baldwin (Dem, WI), Senator Shelley Moore Capito (Rep, WVa), and Senator Amy Klobuchar (Dem, MN) in support of a Senate companion bill to HR 2515 introduced by Senator Ayotte earlier this year.

Meanwhile, I am working on my three-minute presentation to Legislators on The Hill in Washington, DC.  Again, if my and my family member's story can lead to legislation calling for adequate care upon first diagnosis, what a difference that would make!

Another update:  today (March 17, 2016) the Eating Disorder Coalition announced that the key provisions from the Anna Westin Act passed the Senate HELP Committee today.

One step at a time......

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.