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Eating Disorders Coalition

 

As many of you may already be aware of, on February 25, 2009 the Eating Disorders Coalition along with the FREED Foundation and others advocating the FREED Act – The Federal Response to Eliminate Eating Disorders – H.R. 1193, successfully were able to get the bill to the House floor.

The next important step towards getting the bill passed will be taking place on April 1-2, 2009 when EDC holds their annual Lobby Day gathering.

If you are not able to attend this event and/or additionally would like to add your voice towards enacting this important and comprehensive legislation for eating disorders that promotes research, treatment, education and prevention programs please write to your state representatives urging them to learn more and help support the passing of the FREED Act.

Below is a sample letter that can be modified and added with your personal message:

Your Name
Street Address
City

March –, 2009

The Honorable First Name Last Name
United States House of Representatives
Washington, DC 20515

Dear Congressman(woman) –,

As a member of the Eating Disorders Coalition and someone who has personally suffered the impact of living with an eating disorder, I am writing you today to ask your support for the Federal Response to Eliminate Eating
Disorders Act (H.R. 1193).

This is the first comprehensive eating
disorders bill in the history of Congress. By focusing on research, education, prevention and treatment this bill is a beacon of hope for the millions of people currently suffering from an eating disorder.

It is estimated that 9 million Americans suffer from anorexia, bulimia, binge eating and other eating disorders. Eating disorders are associated with a host of medical complications including cardiac arrhythmia, cognitive impairment, osteoporosis, infertility, heart failure and most seriously death. In fact, anorexia nervosa has the highest death rate of all mental disorders, upwards of 20%.

Research shows that eating disorders can be successfully overcome with early detection and adequate and appropriate treatment. Unfortunately eating disorders are often undiagnosed by health professionals and/or access to treatment is limited. Less than half of all people with eating disorders receive the treatment needed.

The Federal Response to Eliminate Eating Disorders (the FREED Act) can change these state of affairs. H.R. 1193 will save lives by providing more funds for research so that we can better understand, prevent and treat eating disorders, grant programs that provide training for health professionals, and steps toward better access to treatment coverage.

We urge you to sign on as a cosponsor of the FREED Act. I look forward to
hearing from you. Thank you again for your consideration.

Warm regards,

*You can make a difference! Merci!*

Umbrella Erin Hael

Anyone involved with eating disorders knows all too well the commitment, expense, and time that treatment and recovery encompass. There are no quick fixes on this journey towards reclaiming ones’ Life back from a devastating illness that can lead to chronic health debility and even death if left untreated.

Just mention the word “insurance” to anyone acquainted with eating disorders and you will undoubtedly get a credible grunt of frustration or despair when it comes to what insurance companies “allow” for treatment and follow up care. And for those of us who have loved ones requiring the most intense level of care in either residential ED programs and/or partial-day programs for any length of time, insurance becomes yet another demon to lock horns with; and certainly not what caregivers, families and sufferers need tacked onto an already onerous battle to save someones Life.

We have had many a battle with insurance to get our daughter the care she deserves, and to push beyond the bullying that desperate parents face when told your child cannot get the medical services s/he needs until you’ve taken out a second mortgage, gone bankrupt, taken out exorbitant loans because extended coverage was denied, but by all Dr recommendations is absolutely necessary in continuing care and treatment.

The manner at which eating disorders are covered by insurance (and obtaining equal access to quality care is another needle-in-the-haystack!) is still quite crude that my blood boils when listening to parent after parent exhaustively stating the same heartrending scenario over and over. And speaking with parents and sufferers outside the US, you find some of the same- sometimes even worse.

Well, after stating all this rather negative reality, there is some hopeful news to share with the now infamous New Jersey Blue Cross/Blue Shield class action federal court case which restores my belief, coupled with the progression of Mental Health Parity, that 2009 will continue to move forward and keep chipping away towards change in improved coverage and treatment of eating disorders that is well overdue:

 
January 10, 2009 Horizon Blue Cross/Blue Shield of New Jersey has tentatively settled a class action pending in federal court in Newark, New Jersey involving reimbursements for medical expenses relating to the treatment of eating disorders. The terms of the settlement must still be approved by the court.

Although Horizon covered treatments related to eating disorders (primarily anorexia and bulimia), including hospitalization, outpatient treatment, psychotherapy and nutritional counseling, there were benefit limits on such treatments.

Under the settlement terms, Horizon has agreed to pay claims for eating disorders that were denied because they exceeded the plans’ maximum benefit for non-biologically based mental illness.
Horizon has also agreed to give parity treatment to eating disorder claims for Horizon insureds in the future and to enhance its appeals procedure by providing the right to select review by an eating disorder specialist of all claims denied on the basis of medical necessity.

 

With the passing of Mental Health Parity many who suffer from eating disorders will finally (albeit slowly-see how your state ranks) be able to begin receiving adequate insurance coverage and necessary treatment needed for long term recovery goals. Great progress without a doubt.

But there is a Judge by the honorable name Faith Hochberg who is rockin‘ the houses of Aetna, Horizon- Blue Cross/Blue Shield who has recently ruled:

                           __________________________________________________

– approval Tuesday to a class action settlement that requires Aetna Insurance Co. to provide about $300,000 in back payments to 119 insureds whose benefits for eating disorders were limited.

The company also promised to treat future claims more liberally and make internal reforms to resolve disputes over benefits for eating disorders.

U.S. District Judge Faith Hochberg also approved a $350,000 payment to the plaintiffs’ class counsel,
Nagel Rice in Roseland, N.J. All of the fee comes from Aetna, not out of a percentage of the class members’ recovery.

“It makes perfect sense to me,” Hochberg said after ruling that
the settlement in De Vito v. Aetna, 07-418, was fair, reasonable and adequate.

The settlement requires the company to treat some claims for anorexia and bulimia as it does claims for biologically based mental illnesses, such as schizophrenia. That makes a class of eating-disorder patients eligible for eight months of treatment, compared with 20 outpatient visits per calendar year and 30 days of inpatient benefits.

The 119 insureds who will receive checks were those who had at least one claim limited by Aetna’s practices during the past seven years. And in the future, Aetna will treat anorexia and bulimia the same way it does BBMIs.

In addition, anyone Aetna determines to have no medical necessity for enhanced eating-disorder treatment during the next four years would have the right to elect binding review by an independent eating-disorder specialist selected with input from the plaintiffs’ lawyers.

At the same time, though, the settlement affects only patients in “fully insured” plans — those funded by employers. Enrollees in self-funded plans, such as employee welfare and state worker health benefits programs, are not covered by the settlement and would not automatically benefit from the more liberal process.

Nagel estimates that about 530,000 of Aetna’s 1.2 million insureds are eligible for the new claims procedures and that the process could be worth up to $2 million in recoveries by the insureds.

Law.com

 

As many of us already know recovering from an eating disorder takes time, patience, perseverance and an added sense of humor never hurts either. This journey of Hope, Change and Healing can be a long road, but well worth every step! And when a sufferer is not able to obtain the adequate and experienced care that is required for ED treatment this journey can seem like climbing the Himalayas.

Families and sufferers can have a voice and advocate for the care and support they deserve, but it takes some persistence and not taking “no” for an answer but digging deeper and rooting out the resources and connections one needs to help along this road.

One courageous and honorable teen diagnosed with anorexia has taken such a step in Northern Ireland, and is demanding change all the way to the courts to get the care she needs- bravo!

With fire-in-the-heart like that, the sky is the limit to what can be possible so that everyone suffering from this illness will eventually have access and covered care that they need to fight the battle and win their full and healthy lives back.

-shanti

President Signs Mental Health Parity Legislation!

Thanks to the thousands of Advocacy Network members who lent tireless support to our years-long effort to win enactment of legislation to end discrimination in mental health coverage. Today we won! After House passage of the Emergency Economic Stabilization Act today, 263-171, President Bush has at last signed mental health/addiction parity into law.
Click here to learn more about the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008.

-Fantastic news worth celebrating!

 

While I’m playing with WP Themes -my creative side itches- I’ve been curious what other parents and those who have found their path towards healing, recovery and well being from their eating disorder find gives them greatest support and sustains them throughout? At your most difficult times, what has buoyed and held you steady, lifted you up and got you through (like my friend Ganesha up there)? 

Do you wish some things could have been done better in hindsight, wished clinicians, treatment providers, community resources, insurance, etc. could have known perhaps more than you, practicing with up-to-date, evidenced-based research and data vs rehashing false and painful stereotypes that can keep a family from getting the best care possible? And that  everyone worked more as a cohesive whole vs fragmented, inconsistent, and leaving too many gaps for uncertainty and misunderstanding– or worse barely any informative communication or basic follow up to keep focus on the best methods towards recovery and support?

And if you were/are a parent(s), caregivers, extended-family, siblings do you wish there would have been services that encompassed and included the entire family, and not just for weekly family therapy sessions, the once a month “Family & Friends” events held at treatment centers.  But further additional healing and supportive measures like what is comprised in most respite centers/facilities and typically standard for family members when a child has cancer, or any other major life-threatening illness. 

All of us know that ED’s are potentially life-threatening if proper treatment and nutritional support are not addressed, and the sooner diagnosis is made and intelligent, comprehensive action taken, the better the chances recovery can be, and less relapsing and monumental expenses for the revolving door of IP, OP, residential, IOP, etc. care.

Being a parent of an adolescent with an ED, there are unique aspects to what parents and family members need, your life and “time” seem to come to complete stops and starts depending on where the progression of the illness may be, how many extra hands there are to pitch in when you need time to take care of yourself, take care of other siblings, reconnect with spouses, get some perspective, and to keep centered and strong. 

If I were to draw a graph of how our family has progressed through our daughter’s illness, it would have some deep dips and high escalations, and many dotted straight lines– but not always clearly defined and consistent (thinking about this makes me want to create just such a map/graph!)  Sometimes things seem to just “click” and things move forward without much ado; but there are other times when it seems the cyclone of ED can just demolish the very health and Life of an entire household, leaving pulverized rubble and ruin that needs the utmost and gentlest of care and compassion– those are the moments when all your resources get pulled together and you roll up your sleeves and get down to business– you take action and you may find setbacks galore, but you also find incredible inner resilience, Hope, courage and more Love than you ever realized was always there. 

Moments like these can also be some of the most magnificent and humbling of points within our human experience …

 I feel a deep human need to collectively share these experiences, swap stories- like sharing a recipe!- connect with others who “get it” and aren’t going to be dismissive, discourteous, judgmental or even worse, think I’m a bit over-the-top… off my rocker… box ‘o crack ‘o jack, etc. 

And I think if it weren’t for the Internet of collective voices, fellow parental-comraderie and individuals such as an incredible Mom who hosts a forum for parents to find one another, along with so many of you whom I’ve met virtual-via email, your websites/blogs, etc. and found such amazing insight and resolve into this illness– I do feel I would have felt much more isolated and possibly a bit more despairing (I say a bit since my Finnish ancestry is laced with “SISU” = strength… so this would not have lasted long) but it also points to the reality of the importance to support and encourage one another through the recovery and healing process within eating disorders.  To make certain adequate treatment is delivered, proper support and resources are available in all demographics. 

Change is still quite snail-paced within ED’s, so I think our collective voices and efforts however big or small DO matter and make a difference.

Now if only I could get some of the ladoos (Indian sweet) that Ganesha is holding… my rant would be complete.

-shanti

 

 

St Urho                     

“Heinasirkka-heinasirkka mene taalta hiiteen!”

          (Grasshopper-grasshopper go away!)

Having Finnish ancestral blood-lines, we take this man-made legend with both some celebratory flare as well as good-natured humor.  Though when I was growing up, St Urho was presented more as a fact– I actually believed there was a real St Urho chasing those grasshoppers out of the vineyards!

And I do remember drinking the grape juice (now we’ve switched to framboise)  having bowls of fish soup (not too memorable taste-wise, but I’ve revised this recipe accordingly throughout the years) wearing something purple, and having a sense of pride in our family’s heritage (rarely did anyone I know growing up have any idea about Finnish culture, let alone being a fellow Finn) ; and how my great-grandparents came to the US, fleeing Soviet conflict to make a better life imbued with Sisu strength.  Imagine too, to my surprise and sense of fellow-kinship when I found out one of my teacher’s was also Finnish and knew this St Urho character, even going so far as to wear the green (representing the grape leaves) and purple and taking the time during chemistry class to shed a little cultural legend to the day!

So you may be wondering what I’m going on about… what does this have to do with eating disorders, has this woman lost her mind completely, gone off on a tangent of sorts? Well yes, and no…

Our daughter has been battling anorexia nervosa since last year, and as most families with young adolescents struggling with ED know- -it’s definitely a challenge, sometimes requiring every last reserve, every ounce of your sanity, energy, finances, etc. to help pull your child through the black hole of this life-threatening illness towards supporting, loving and helping them find their way back to Life, to Hope and Healing.  And it is possible for your child to find their way back towards full recovery, in whatever form that may take that fully supports, treats and assists your child and family best to getting the best care possible.  

Many times as parents when confronted with the diagnosis of an eating disorder, after we clear the fog of our own lack of knowledge having not experienced the illness first hand, and then educating ourselves, we may also feel conflicted by all the advice of those while well-meaning, or touting as “experts”cannot ultimately speak for our individual circumstances and personal family needs, preferences, values and choices.  And as parents, we have the right to make those fully-informed decisions knowing our child best, and not feeling coerced, manipulated, brow-beaten or given endless heavy-handed black/white-right/wrong ways of fighting this illness and finding the best treatment options for our child– whatever it takes.  You, as the parent, will know what is best for your child and should not have to feel guilty or at fault, or having failed , or less of a parent in any way for your choices towards making treatment possible and suiting your individual childs’ needs as well as that of your family.   

However, not making a decision or acting towards taking a stand against your childs’ eating disorder/illness will only dig that black hole even deeper, and really no one suffering with this illness or their families should be alone in finding help and the care they deserve.   There is help, support and resources available, but since eating disorders are still relatively incoherently and inconsistently treated, and in many instances not adequately covered by insurance for long-term outpatient treatment/services, let alone intensive residential treatment options when necessary, we as parents must take a stand, advocate for our children (and ultimately all those suffering from an eating disorder) and be the “squeaky wheel” in our child’s treatment plan. 

Even when your child is at a “safe” stage within his/her recovery, as parents we know there is no looking back– our lives have profoundly changed, ED is not a welcome guest, yet at your childs’ most vulnerable moments, the disorder will work so damn hard at trying to stay and undermine progress– Health and Recovery.  Recovery takes time, patience and perseverance.  It requires us as parents to listen, be present, and support our children yet also allowing them to take ownership of this process without being left on their own, and with ED’s it’s a complex balancing act because we love our children and want to keep them safe, but at the same time cannot force the process on our terms, or by what we feel when they are feeling something completely other– recovery does have to be ultimately theirs, they will own it, and feel the triumph of success everytime ED rears it’s ugly head and they can face these challenges with courage, resilience and continued strength.  Slowly dismantling this pernicious illness, as Lee Wolfe Blum pointedly states: “protect your recovery”…. like the patron St Urho, chasing after either the original mythical frogs or later the grasshoppers; I think there are a couple of translations that have the word “hell” added to the chant.   

We Finns celebrate this day every year at this time in March, (some corners of the globe even have a dance ritual they gather together to enjoy– very interesting!) but this year something about St Urho’s Day brought an even more striking meaning to me personally with his image holding up the trident with a captured grasshopper, I was instantly struck by the power of this statue/image minus the grasshopper(s):  “ED- ED, get the hell out!”

-May the spirit of this St Urho’s Day be with you all!

Advocacy

“It’s about opening up the doors and ending the shadow of discrimination against the mentally ill.”

-Patrick Kennedy 

Today’s news is quite uplifting.   And the 268-148 vote does speak to the dire need to continue towards enacting mental-health parity and mandating health insurance coverage equal to that of physical illness for mental health  and addiction.  I think Paul Wellstone would be encouraged to see some progress being made after nearly a decade of back and forth bi-partisan bickering and huge corporate influence , (and currently, to no one’s surprise, big-ph-arm Eli Lilly  is really throwing a tantrum!), to strangle this vital legislation.

And there are plenty of critics who are rallying this victory as “mental-health insanity” and clearly looking only at their own financial dunk, but it’s truly time to stop stigmatizing those with mental illness who clearly need the same standard of quality care and treatment that any sane society would not withhold or financially ruin one with personally while working towards full health, healing and recovery.

I, unfortunately live in a state that does not currently have mental-health parity- yet.  But I was impressed to read an in depth study done last spring by the La Follette School of Public Affairs in our state, that despite not having all the conclusive data to make absolute recommendations regarding mental-health parity, has incredibly convincing and thought-provoking details putting to bunk some of the primary reasoning against implementing mental-health parity that I would encourage anyone interested in advocating for mental health disparity to read.   These studies really can be applied and adapted for further critique and implemented across all states, so that we will eventually see more than thirteen states that have adopted mental-health parity law.

-shanti

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