Every day some family in our practice struggles with their insurance company over eating disorder treatment. It is not enough to provide the best, most up-to-date and effective treatment for childhood eating disorders; it’s not even enough finally to locate a suitable eating disorder treatment program (usually no thanks to their insurance company; they only tell you where you can’t go!). Increasingly parents are also being forced to fight protracted battles with gigantic bureaucracies in order to get access to the very benefits for which they work and pay each and every month. All too often, when the times comes for families to get eating disorder help, they are met with a blizzard of red tape. Many are so frustrated they give up entirely.

Sometimes parents are told the Kartini Clinic is “out of network” and they will be required to pay a large share of the cost of treatment for this reason. Sometimes parents are told they have “no mental health benefits” or “no coverage for eating disorders”. Sometimes they are told by “experts” at their insurance company that there’s “no medical necessity” for treatment. Insurance companies even have a disclaimer that would be funny, if it weren’t so sad: “pre-authorization is no guarantee of payment.”

How to fight back? Remember that you are the best advocate for your own child:

1. Get on the phone every day. Yes, every day. Unfortunately this is what it often takes.

2. Demand a case manager. Do not squander your time and energy re-explaining your situation to a new person every time you call. If they refuse to assign a case manager, ask for a supervisor. If they still refuse, make clear to them you will not be brushed aside and that you plan to file a complaint with the Oregon Insurance Division. This can work but only if they know you will fight!

3. Take notes. I say it again: take notes. Get the name and number (if possible) of everyone you speak to. Refer to them when talking to supervisors.

4. Know your rights and your benefits. That means reading and understanding your policy’s detailed benefit book (not the one page summary of copays, coinsurance, etc.). If you don’t have one, ask your employer or demand one from your insurance company.

5. If you have an HR/benefits person at your workplace, use them! Get them on your side. In many situations your employer decides what will be covered and how—make sure your child is well known to them, so that they are making decisions about a real child, not just a statistic.

6. Despite the fact that insurance policies cause our eyes to glaze over, and can make anyone feel desperate and incompetent, do not avoid taking the lead by trying to rely on the doctor’s office to “do it for you”. While providers do really want to help, no one can really do it for you. This is your insurance.

7. As a parent, you should be able to investigate treatment options and send your child to a place you think is best, not the place insurance company thinks is best because they have a financial arrangement with them.

8. Insist on a clinical review: the insurance company doctor should talk to one of our doctors; insist that they call us. If we call them that won’t carry the same kind of leverage.

9. Get a lawyer if you have to. This is not because you want to “sue” your insurance company, but because you want them to take you seriously. Let your insurance company explain to an attorney why they are denying care or trying to dictate which treatment option is medically indicated.

And please remember: this is an adult fight. Do not share your distress over insurance or finances with your child. It can only make things worse.