You'll find hundreds of files on cleft lip, cleft palate here on

This one is about: Insurance: "Taking on the Big Guys"

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"Taking on the Big Guys" by Joanne Green

Your child has needs. Nobody disputes that. You are insured. Your child's needs are medical. There should be no problem. Right? But there are problems.

Time and again families all over the United States are thrown into the role of advocate, fighting for their child's right to appropriate treatment. The problem? Insurance companies are in the business, first and foremost, to make money. And our children represent an obstacle that inhibits their profits.

In an effort to reduce their costs insurance carriers find ways to deny coverage of what seem to be essential services. And what's a parent to do when they hear responses from their insurance carriers such as one of the 

"The Problem is pre-existing."

A child's cleft care will continue throughout her growing years. Many people will, for one reason or another, change insurance carriers some time during the first 18 - 21 years of their child's life. When the new carrier insures that family, in many states, the child's cleft repair may be denied due to the fact that it was a known condition that pre-existed coverage.

"The services are not medical."

Children with clefts need many services that are not provided by a medical doctor. Those services may include speech therapy, orthodontia, prosthodontia, psychology, audiology, case management, etc. Most of those services are represented on a cleft palate team, however many insurance carriers will not pay for those services. They pick and choose which service providers they will pay and which ones they will deny.

"The service is not medically necessary."

Insurance companies often cover only that which is necessary to save life or restore function. A lip revision, for instance, will do neither, although it could very well be necessary for the child's positive self image. If it cannot be justified as something that will prolong life or restore a needed function, it is not "medically necessary" and is relegated to the ranks of tummy tucks and face lifts. As parents, we know that scar revision and rhinoplasty for our children may be an important part of their reconstruction. But the insurance company only sees cost, and a cost that they could well avoid.

"Wait. Fill out this ream of forms, we need confirmation of XYZ, make an appointment......."

This is called "gate keeping". It is not spelled out in any insurance manual, but the process is well understood. Put the patient off long enough and the problem, or the patient, will go away. Keep them from entering the gate. It is often effective. It is always frustrating.

What can you do when your child is denied services? Parents are not powerless! There is much that you can do. And in the end, you will likely get the coverage they once turned down.


Laws change dramatically. Many times a relevant law will change that in fact will help you to advocate for your child's care. But don't expect your insurance representative to apprise you of that change. For instance, in California, with the passage of SB 761 (10/91), insurance carriers are no longer able to disallow a child's coverage on the basis of pre-existing condition. However, it is the family who often must tell the carrier what their obligation should be under the law. Know the law, and quote it.  Better yet, get a copy of the relevant laws in your state and take them with you to your insurance office. Interestingly, when faced with the law in black and white, many an argument is immediately settled.


Often times the insurance representative that you are speaking with over the telephone is not keenly aware of exactly what it is that the policy offers to your child and his particular condition. More often than they would like to admit it, the representative at the desk is giving you his best guess based on what he thinks is reasonable, given the way the company does business. Sometimes that best guess is wrong. I have been known to quote from my own policy to those who were representing that policy, and in so doing I have informed them about their service. In some cases, yours might be the first cleft case that that person has dealt with.


Almost every carrier will offer some sort of appeals process. If you feel that the denial is unfair, request an appeal. Always make that request in writing, immediately after the denial has taken place. Then get busy. Prepare your appeal diligently and recruit the assistance of others (ie, your doctor, the cleft team, etc.) Make sure you have everything documented before you face the appeal! This will include letters from all professionals who have any interest in your child's case. Get your own copy of letters others write on your child's behalf.


When the initial claim is made, and when letters are written for the purpose of making an appeal, certain terms are more likely to lead to a positive resolution than others.

Terms that do not elicit a positive response include, "Cosmetic"; "Psychologically necessary"; "To improve the appearance of..."; "Development of self-esteem"; etc. Terms that are more likely to gain the attention of the carrier include, "Medically necessary"; "Part of a staged repair"; "Necessary for the proper function of..." etc.

In fact, simply by referring to the procedure as "reconstructive surgery" rather than "plastic surgery" is likely to strengthen your case. The reason is that many insurance companies will not cover plastic surgery (face lifts, tummy tucks, liposuction, etc.) When they hear the term, immediately the mind set is negative.


Without fail, keep all your receipts, all invoices, all letters, everything that you receive regarding your child's care. Also, never send a letter that you do not first photocopy for your own records. Make notes, including dates and NAMES of all telephone contacts made concerning your child's coverage and the denial.


Your insurance commissioner is there to hold insurance companies to their obligations to pay for covered services. He or she can be your strongest advocate. Parents who feel out-gunned when they go up against the insurance company must remember - they have access to some pretty big guns themselves!

In the end, you may not win. Laws are still not entirely fair in all areas, and sometimes families simply have no recourse. At that point, it is time to advocate for stronger laws. Meanwhile, suffice it to say that, while you may not always win the good fight, you have a much better chance to do so than if you do not fight at all. You, and only you, are the best advocate your child will ever have. So go ahead. March on into the Lion's Den, and take on the big guys!

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