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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

The RANZCP guidelines also warn there is no evidence supporting the use of psychotropic medications for adult anorexia. I found this particular protocol interesting, as every program I’ve attended over the past 11 years has tried to drug the hell out of me – including forcing me to take antipsychotics used to treat schizophrenia. A recent meta-analysis found there is absolutely zero evidence supporting the use of antipsychotics to treat anorexia[vi].

I was often a walking zombie as a result of over-medication. One Denver program forced me to take Zyprexa for months, which eventually landed me in a locked psyche ward for three days – because the medication brought me near the point of psychosis.

Ilana Kornfeld, 22, who attended the same Utah program I did in 2012, said the center forced her to take naltraxone – a drug used to treat substance abuse, and which numerous clinicians have since told her is completely inappropriate to prescribe for eating disorders.

“It was a terrible drug that made me feel sick and shaky, and I told [the center] that. But I was told ‘stay on it a bit longer. We can’t force the pill down your throat, but you would be non-compliant if you refused,’” Kornfeld, who was 20 at the time this occurred, said. “The amount of manipulation that went into me agreeing to take a drug I didn’t want to take in the first place, [and then me] continuing to [be forced to] to take it is absolutely painful to think about.”

This is just one small illustration of a huge problem within the industry that even many inside it admit needs addressing: the lax, state oversight of for-profit eating disorder programs, alongside wide disparity in licensing standards centers throughout the nation. Centers are also not required to adopt treatment protocols specific to eating disorders to operate a program, in any state.

“Anybody can say, ‘I’m an eating disorder specialist.’ There’s no quality control,” said Dr. Russell Marx, Chief Science Officer for the National Eating Disorders Association (NEDA). “The programs are not standardized… There’s all these places who say ‘We know how to treat eating disorders,’ but there’s no evidence to support it…. If you’re a family member it’s very hard to assess the quality of programs.”

In California, for example, all residential eating disorder centers are licensed by the Department of Public Health, under the category of “Congregate Living Health Facility” (CLHF), one of eight categories of long-term care facilities regulated by DPH. The other categories in this grouping include facilities providing rehab for people following brain, spinal or other life-altering injuries, skilled nursing homes, group homes for the developmentally disabled, retirement or assisted living facilities, pediatric palliative care centers, and hospice facilities, among other things.

While on one hand, this means California’s residential eating disorder programs are held to stricter medical and safety standards than programs in many other states (for example, the administrator is required to be a registered nurse), the level of mental health standards California programs are held to appears wanting. Eating disorder facilities are the only form of residential, mental health treatment overseen by the DPH; all other forms of 24-hour psychiatric care are overseen by the California Department of Health Care Services, including substance abuse programs.

This simply makes no sense to me. If you review the Health and Safety Code standards pertaining to CLHF’s (1267.13), you find nothing related to ensuring centers live up to quality, mental health treatment protocols or best practices – whether general or eating disorder-specific. And standards such as these – lacking specificity in regards to regulating the mental health side of treatment – are the norm throughout the nation.

In Utah, residential eating disorder treatment centers are overseen and licensed by the Department of Human Services; they are considered programs needing minimal medical, in contrast to California. Utah ED program licensing is the same type required of substance abuse treatment centers in that state – but it also covers children group homes and facilities for the physically disabled. In Missouri, residential eating disorder licensing even varies within the state itself. While McCallum Place is licensed by that Missouri’s Department of Mental Health as a “residential and day program,” Castlewood, the state’s other major ED program, holds a general state license as an “ambulatory mental health facility.” In Arizona, Remuda Ranch is licensed by the state Department of Health Services as a “Level 1 Behavioral Health Program.”

The variation goes on and on, the maze of standards and oversight so complicated and diverse that it is simply beyond the grasp of this writer – much less any potential clients or families – to comprehend or dissect.

This variation is, in fact, one argument Blue Shield’s lawyers made in my lawsuit (see “Part 1” of this series). Combined with the lack of outcome studies proving residential care’s efficacy, Blue Shield argued that residential eating disorder treatment, as it exists in the U.S. today, is more akin to education than to medicine.

I am inclined to go even further with that statement. When you take into account the experiences of former clients such as myself and my friends, and practices described in “Part 1” of this series, treatment at some centers virtually amounts – in my opinion – to quack medicine.

Wrote researchers Michael Strober, director of eating disorder programs at UCLA, and Craig Johnson, Chief Science Officer of the Eating Recovery Center, on the state of eating disorder treatment and thinking today: “It has become easy in our field for misunderstanding, misattribution and plain lack of knowledge to stand in for clinical wisdom…. It is little wonder that so many patients and families tell us they feel at a loss, not knowing who to turn to for sound, factual advice.”

Obtaining specialized, eating disorder accreditation, by one of the two major, national accrediting agencies operating in the U.S., is being offered as a possible solution to this problem by some leaders in the field, including the Academy for Eating Disorders (AED) and the Residential Eating Disorder Consortium (REDC).

Accreditation by a major, independent health care agency has long been accepted, throughout the behavioral health industry – as a way to help ensure treatment quality, and universalize the standard of care provided throughout the nation[vii]. Programs which obtain accreditation must conform to uniform, national practice standards.

Currently, most eating disorders obtain the general, behavioral health accreditation offered by the Joint Commission on Accreditation of Healthcare Organizations’ (JCAHO). Over the past two decades, the Commission on Accreditation of Rehabilitation Facilities (CARF), has also emerged as another, major accreditor of mental health care programs.

The Joint Commission standards are generic to all mental health programs, and therefore not eating disorder–specific. In addition, according to the aforementioned James, of Castlewood Treatment Center, the Joint Commission’s behavioral standards are primarily concerned with administrative and safety issues.

Castlewood, which operates programs in Missouri and California, is one of the only eating disorder centers in the nation to possess Joint Commission accreditation as well as the specialized, eating disorder-specific accreditation introduced by CARF in February 2013. CARF’s standards, which can be used for residential, inpatient or PHP (day treatment) programs, are based on guidelines developed collaboratively by REDC, the AED, and the International Association of Eating Disorder Professionals (IAEDP).

If more programs obtain such specialized accreditation – currently only six programs have it[viia] – it could mark a significant step forward in ensuring quality control. The REDC collaboration came about expressly due to some professionals’ concern that the proliferation of unregulated treatment is resulting in programs that don’t adhere to the level of rigor needed to ensure the safety and recovery of individuals battling severe eating disorders[viii].

“The CARF guidelines are very specific,” the aforementioned Lampert, who is also executive director of REDC, said. “It was very exciting that CARF adopted them.”

At the request of organizations like REDC and the AED, the Joint Commission has also started working on developing a set of ED standards to incorporate into their behavioral health care accreditation. After reading a summary of their efforts to date, it looks to me like the Joint Commission standards may be even more rigorous than CARF’s[ix]. The Joint Commission hopes to adopt and implement the ED accreditation by July 2016.

Lampert believes many residential centers have not obtained the CARF accreditation because they are waiting for the Joint Commission guidelines to come out.

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7 comments

  1. Hi Jeanene, Your articles are amazing. We need to link up somehow. Please contact me. I am linking to this article and recommending your site to others.

    I also know that “help” for anyone who can’t pay an outrageous fortune doesn’t exist out there, and that “no treatment” or to escape what is forced upon us is for most of us, the best option of all. I am not the only one who “got better” by realizing that all the lies taught to me over the three decades I spent in “therapy” were completely false, and their drugs were useless to me and poisoning my body. My aim now is to get my family back, to repair the lies that were told to them, and to warn others not to fall into the trap I fell into. My blog is at http://juliemadblogger.wordpress.com (or http://www.juliemadblogger.com).

    Julie Greene

  2. Melanie says:

    Wow! You are so spot on about the needs of treatment for older women! I’m 48, have been in multiple treatment centers, inpatient and out, for the over the last sixteen years. You’d think I’d be in a much better place after having had this much “help”. What I am dealing with now is the shame and humiliation of not being “willing” or “compliant” enough to beat SA. I’m at the lowest BMI I’ve ever been at, the most depressed/anxious and feel I’ll never get better. The most recent attempt at residential was a year ago. Due to my low weight I was forced to sit in a wheel chair every waking moment without any concern how this would affect my severe chronic spine condition (would have been much happier being stuck in a bed tube fed). I complied like a good little girl and the result was the worst pain I’ve had in years finally crawling out of the chair just to lie on the floor bawling and praying for relief. This happened on a weekend which meant there were no specialists at the center. A 20 year old tech admonished me to get back into my chair or I would be in trouble. That’s when I said, “ENOUGH”! so checked myself out never going back. I got an apology from the center but the damage was done. I spent the next month trying to recover from the immense pain and damage of being in that flimsy wheelchair. My doctor was aghast at what happened. And by the way, I was expected to wait for a tech every time I needed to get my meds, eat, go to the bathroom, group, outings, etc…They were way understaffed so I just sat in a hallway most of the day waiting for anyone to help me. The crazy thing is they knew about my concern for individualized care but once they got me in there I received none. I’ll end by empathizing with you and the forced medication issue. At one center I was on enough gabapentin and Serequel to sedate an elephant. I was a walking zombie. When my family came to visit they said it was like I had a lobotomy. The center stated that if I refused to take the meds as directed my insurance company wouldn’t pay my bill and I’d be responsible for the charges. Ugh. Let’s keep this conversation going. THANK YOU FROM THE BOTTOM OF MY HEART FOR WHAT YOU’RE DOING!!!!

  3. Kate G says:

    I have experienced the horrors of a residential treatment center and also the benefits of one. I have gone to two programs and they were as different as night and day. I left the first program much worse than when I entered and relapsed within three months when I then entered my second program. This program was different. They were kind, nurturing, effective and knowledgable. I spent about six months there and that time “jump-started” me into recovery. I left in a very solid place and have now managed to remain treatment center free for about four years. I do credit this to the intense work that happened at that center. They took a whole person approach as well as an individualized patient approach and I (and many other women) responded well to it.

    I won’t say they cured me but I will say that they made it possible for me to begin living in the world again. I’m not in any way, shape or form functioning as a normal person of my age but I am stable enough with my ED that I can be treatment center free and remain physically stable. I struggle more with my co-morbids than I do my ED.

    I agree that residential centers need more oversight and outcome studies but I do think there are more good ones out there than you are implying in your article. And perhaps they shouldn’t be the first line of care but in an area like my own where the next level of care offered up from 1 hour OP sessions is an IOP four hours away there isn’t many other options to receive more intensive help. Perhaps a good answer would be to offer more day programs and the like but I can’t see that happening in my area of the country.

    I do think many of the quality residential programs often aren’t covered by insurance and so many people are limited in their options and end up in places that do have poor success rates and very poor programs. I do believe you when you say that you believe a different approach should be taken for SE-AN. However, for more typical and early manifestations of the disease I do think quality RTCs can be very valuable.

    I look forward to reading the rest of the series but I do hope you fairly portray RTCs when you write the section of experiences inside the centers. Not everyone has the horrible experiences you had. Some like me had good experience and I hope you portray a fair representation.

  4. Krista says:

    As someone who, for many years, was what most would call a “revolving door treatment kid” I have seen the best and worst treatment has to offer. I can say now, with complete confidence, that after a 15 year battle with anorexia, I am recoverED. Not “in recovery” like most facilities tell you that you will always be, but recovered. I have been kicked out of centers, called a chronic case, a hopeless case, and I am now recovered. Have you looked into the Monte Nido programs? I seriously owe them my life. They are the only program have I have been to that fights the eating disorder, not the client. It is the most well rounded program I have ever been to and the founder is one of the most amazing, humble women I have ever met. I worked with therapists, RDs, trainers, etc. who were recovered. I never once felt like it was just some talking head who really had absolutely no idea what I was going through. When they said they understood, it was the first time I was in treatment that that phrase didn’t make me absolutely irate because I knew they actually did understand. They fed my soul as well as my body and made me realize that I had the ability to live the life I wanted to.

    My first treatment experience was Remuda Ranch and where I thought I had failed, it was a case of the facility failing me. It was before insurance would even consider covering eating disorder treatment- they wanted my parents money. They wanted to strip me down and make me feel like I needed them and couldn’t continue to do any of the things I loved if I “really wanted to get better.” I’ve also been to my fair share of inpatient facilities- only one of which I would ever recommend to anyone. Anyway- your article was an interesting read and one with plenty of merit. I’m just saying, I did find the right place, and they weren’t after my money and genuinely wanted me to succeed. I’m still in contact with the majority of the staff i worked with and visit the house any time I’m in California. There is an up side out there- it’s a matter of knowing the questions to ask and what to look for.

  5. Melinda says:

    I would be so interested in your continuing this series. It’s given me a lot to think about. I work in the mental health system in authorization, and find it so interested to see that there is such little evidence based practice for eating disorders, and also find the comparison to SUD services interesting- long term residential isn’t proven to be effective treatment, so my agency generally prefers community based treatment. However, I feel conflicted–I went to a residential program when I was 18, and thankfully have been in recovery ever since. I had tried lower levels of care prior to that and was in a perpetual cycle of brief stabilization and relapse. From the authorization perspective I can completely understand why insurance doesn’t want to pay, and think it’s horrible that there is such little accountability for providers, which results in poor patient care. It’s so sad to think that so many of these for profit companies are earning billions, while the patients are chronically ill with a poor quality of life, or even death. But I also do feel personally thankful to a residential facility that aided me in getting my life back…All that to say, I hope you keep writing. It is prompting a lot of good thought, and hopefully change.

    • Melinda says:

      To clarify-my own treatment was eating disorder treatment, not SUD, which is why I feel so conflicted. I can see why you write what you do, and how the system has failed, but have also maybe by a stroke of luck been fortunate to benefit from it, and was fortunate to have received compassionate care/not have a traumatizing experience, although I now see that isn’t always the norm. Thanks for sharing your research and perspective on this difficult topic.

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