Understand the Landscape
What most families do not understand early on (and sometimes never) is that practically anyone with a license to treat can legally state that they treat eating disorders. They do not need to have any eating disorder training, experience, or expertise. Believe it or not, they can say this even if they have never treated anyone with an eating disorder. The same is true of eating disorder facilities and the experts at them. There is no legal definition of what an eating disorder expert is, or of what effective eating disorder treatment looks like. Although many programs state that they provide “evidence-based care,” there actually isn’t any definition of what that means; it can mean different things at different facilities. Although there are some voluntary guidelines many eating disorder treatment facilities have agreed to follow, there are no legal definitions of what constitutes eating disorder treatment, and no penalties against facilities that fail to follow these voluntary standards.
Keep in Mind There is a LOT of Money Involved
There is absolutely nothing wrong with a treatment center turning a profit. In fact, some of the most effective programs in the world are for-profit. Good facilities save and change lives and making money does not invalidate that. However, because treatment facilities can make thousands of dollars per day, they do have an incentive to “sell” you on their program. Some programs even send marketing people to eating disorder conferences, rather than clinicians. Almost every facility has an amazing website with accolades about their treatment. They almost all state that they use “evidence-based” treatment (even though there’s no definition of what that means). Nearly all treatment facilities have extremely friendly, helpful, knowledgeable, well-trained people to answer the phone. But sounding good and actually providing life-saving treatments is not the same thing. Do not assume or believe that a program is competent and effective because they have a convincing website and knowledgeable person answering the phone. Do not let marketing make your decision for you!
It’s also important to understand that, due to the amount of money involved, some programs worry more about keeping the person with the eating disorder “happy” than they do about challenging the eating disorder and pushing for true and full recovery. If a patient isn’t “happy” in a program, they can sometimes sign themselves out or get their families to move them, causing the facility to lose out on thousands of dollars. Unfortunately, keeping a patient happy may mean catering to your loved one’s eating disorder. Facilities have a big incentive to get you and your money into their program and then keep you there.
Be Mindful of Inadequate Assessment
Be Wary of Online Reviews
As with most things these days, it is normal to look at a facility’s Google review. Glassdoor and other employee rating sites can also be worth looking at. My advice is to take everything you see there with a grain of salt – patients who loved a facility (because it was “easy” and didn’t challenge the ED) will often give an ineffective program 5 stars, and rate an effective, yet challenging program, very low. Keep an eye out for reviews that look canned and designed to bump up the facility ratings. Looking at salaries and retention rates can give you good insight on if a facility invests in and supports quality personnel.
Don’t Let Geography Decide
You must resolve to choose effective, rather than convenient, treatment. One of the first things you probably did when you found out your loved one had an eating disorder was google treatment facilities near you. Once you understand the variations in quality, you will understand the importance of choosing a facility based on effectiveness, rather than closeness. I see it happen again and again – families who do not understand this choose the facility or program nearby, and then start an endless loop of ineffective treatment that either makes their loved one worse, or simply doesn’t make them better. Choosing treatment based on location rather than effectiveness wastes precious time – something you simply don’t have a lot of when there’s a life-threatening illness at play.
Geography is also important because it can affect your ability to direct the care of your loved one. In some states, children have mental health autonomy as young as 13; in others, parents have full control to age 18. This is something you should be aware of and that you should be prepared to use leverage, to work around, as needed. This means that anything you have that your loved one wants is on the table until they get treatment. This may include school, sports, phone, internet access, time with friends, car, makeup, and for older loved ones, even housing or college. Getting help MUST be more important than anything else in their life. In some states where a minor can refuse treatment, facilities can hold them anyhow if the family tells the facility that their child cannot live at home. They can do this because they cannot leave a minor on the streets.
Learn What Good Treatment Looks Like
Other parents who have been on this journey will be the key to choosing an effective facility. Talk to other parents and find out which programs have a record of success, and which don’t. Ask which programs worked well for patients with similar diagnoses and demographics as yours. Keep in mind there are no perfect programs, but there are programs that consistently get good results with a few misses, and programs that consistently have miss after miss, with only a few successes. The trick question is, where will you find these other parents? Many of us have found these vital connections online. Like all things eating disorder related, the quality of online support can vary. Here are some spaces that I trust: International Eating Disorder Family Support and ATDTfb – Eating Disorder Family and Carer Support, along with the FEAST forums for those who may not be on Facebook.
The value of reaching out to and learning from those with lived experience cannot be overstated. The families who have gone before you have seen the good, the disastrous, and the amazing! Let them guide you along this path. Connecting with other carers is where you will start to learn which programs and even which individual facilities within a program, regularly have success, and which ones frequently are ineffective or even dangerous.
What’s the Long-term Picture? How Will the Facility Train You?
One mistake I often see families make is assuming that treatment will “cure” their loved one and that they will come home from treatment all better and ready to move on with their lives right away. They will eventually get there of course, but it will take time. Unfortunately, eating disorders are not like a broken bone or other diseases where it’s pretty clear-cut what treatment will look like and it’s obvious when you are “recovered.” Your loved one will not come home from any program completely free of the eating disorder and ready to handle it on their own. What a good program WILL do is interrupt eating disorder behaviors, normalize eating and the relationship with food, teach and develop coping skills, increase weight as needed, and, perhaps most importantly, educate and empower families as experts on their loved ones. Before you send your loved one to a facility, find out what type of training and support they will provide you as the parents and family. This training will be key in helping you support long-term recovery for however long it takes for your loved one to do it on their own.
Based on what I have seen and experienced, an adult who did well in an effective treatment facility program will need some level of family supervision and support for at least a year after discharge in order to be able to continue healing and maintain their recovery. For kids and even many adults, it can be much longer than that. The most optimistic timeline for recovery is 1-3 years, and the average number of years is 7. You need to be given resources to help you help your child. Facilities that truly understand eating disorders understand that family is vital to recovery, and they will welcome and even encourage your involvement. Do not choose a facility that does not value you as the key member of your loved one’s team.
There is Hope!
Now that we have reviewed the landscape of eating disorder treatment – the lack of regulations and standardization, the marketing, and the need to find effective, rather than close, treatment, you are probably feeling overwhelmed. That is completely normal and given the stakes, very understandable. Please remember that full recovery is possible and it happens all the time! Many of us have been where you are, and by connecting with other families, researching, and asking lots of questions, you will be able to choose the best facility for your situation. Full recovery happens all the time, and choosing the right facility will be part of what makes it happen for you.
Questions to Ask When Choosing an Eating Disorder Treatment Center
As discussed, it can be difficult to determine whether a treatment center is the right fit. The purpose of asking questions is to find out if the program uses the latest data-informed treatment, sees family as vital to recovery, and has the ability to treat whatever condition is at play for you. You also want to be sure that their definition of recovery match yours – a free and full life, without the eating disorder – rather than the outdated belief that eating disorders are a lifelong condition that never fully resolves. You can use the questions from the F.E.A.S.T website as well as mine below. Think of your own questions too – you know your loved one and their needs better than anyone else. Some of these questions I already know the answers to – and that’s why I would ask them; the responses you get will help you determine if the program is up-to-date on the latest, effective treatments and if they have the ability to help in your situation. Some questions to ask:
- How do you decide what level of care a person needs? What will an assessment look like? What happens if my loved one starts the program and you find they need a higher or lower level of care?
- What can you tell me about your providers? What type of eating disorder expertise and training do they have? What credentials do your therapists, MDs, and dietitians have? (Some credentials that can be meaningful can be found here, but again, they don’t guarantee effective treatment.)
- What is the average length of time staff are retained?
- How do you handle it if my loved one’s team isn’t a good fit for them?
- What does treatment at your facility look like for someone with our diagnosis?
- How do you interrupt and supervise for eating disorder behaviors or self-harm?
- Can you tell me which location is your main/largest/most robust program? What is different about treatment there vs. treatment at your facility closest to my home?
- What ability do you have to treat any co-occurring conditions my loved one may have?
- Will you tube feed them if they refuse food?
- Is getting the tube a choice? If so, at what age? What happens if my loved one refuses?
- What do you see as the role of parents/family in eating disorder treatment? (A good program will see family as key to recovery, even with adult patients.)
- What training will you give me as the parent/family to support my loved one in recovery?
- How do you define “recovery”? What does it look like? (Very important – a truly recovered person is free of behaviors, mentally well, physically healthy, and eventually able to feed themself independently.)
- How do you set weight goals? (This should involve your loved-one’s personal growth charts as well as their mental state.)
- Will you support an “overshoot” or “buffer” with weight?
- Do you allow vegan/vegetarian diets? (a big NO, unless that’s how your whole family ate for at least several years before the eating disorder came along; veganism is not considered compatible with recovery.)
- Can they accommodate a special diet in the case of a medical diagnosis (such as a confirmed allergy)?
- What do you believe is the cause of eating disorders? (If they say family, no one knows, or that it’s about control or a lack of control or anything similar, run. They don’t understand ED. We do not know everything about the cause, but we do know that the majority of cases are genetically-based, neurobiological disorders triggered by a negative energy balance)
- If you do not accept my insurance, will you help me fight for a single-case agreement? (Insurance companies will sometimes agree to pay for out-of-network treatment if no in-network facilities can meet your needs.)
- What levels of care do you provide after residential treatment? Do you have step-downs? If so, how much will housing cost?
- How do you handle it if the person is an adult and wants to sign out against medical advice? Can a minor sign themselves out? How will I be notified?
- Will we be able to visit or talk on the phone?
- What is the age of autonomy in your state? (In some states, kids as young as 13 can have control of their mental health.)
- Will you take a patient who is refusing treatment? What do I have to do to make that happen?
- Will you support me in having a contract with my loved one once they complete treatment?
- For parents with adult patients: If you have medical guardianship, will the facility honor it? Will your loved one have to sign themselves in, even with medical guardianship in place? What about with a power of attorney? Will the facility honor your power of attorney?
As you can see, there is a LOT to consider when choosing a treatment facility. YOU are the best asset your loved one has for recovery and you have the right and the responsibility to ask questions and evaluate if a program will be a good fit for your situation. Do not be afraid of being the squeaky wheel by asking “too many” questions. No one knows your loved one like you do, and no one else cares about them like you. Remember, the treatment facility and treatment team works for you, not the other way around. As you take the steps outlined above, ask questions, and connect with other families who have experienced eating disorders, you will be able to get your loved one the quality care they need, and help them through the difficult, yet possible, journey to complete recovery and a lifetime free of an eating disorder.
Going Sane Film Documentary
Treating Eating Disorders
Types of Eating Disorder Treatment Professionals
Dual Diagnosis or Co-Occurring Disorders
Approaching Someone With An Eating Disorder
Anosognosia (Denial) in Patients with Eating Disorders
Importance Of Getting Help And Being Honest In Medical And Therapy Appointments
About the Author:
Nora Palmer is a mom with many years’ experience with eating disorder treatment, care, and advocacy. She was able to get her child effective, evidence-based treatment as an adult, after getting what they now know was substandard care as an adolescent. She can be contacted at NoraPalmer25@gmail.com
Written – 2020