Hopefully, you will never have to...

But if you ever find yourself in the tough position of having to fight for your own or your child's care in the face of an insurance denial, cleftAdvocate is here to help.

We'll start here with an outline of things you can do before you seek treatment.

Note:  The term "insurance" on these pages refers to both
health insurance companies and managed care organizations (HMOs),
unless otherwise stated.

It is important to know your insurance policy inside and out.  Yes, we know it's boring, but it is vital to getting what you want...and the treatment that you need!

If you don't already have a copy, get with your Human Resources Department or private insurance broker and request the Evidence of Coverage document for your health and dental insurance plans.

Now, pour yourself a cup of coffee and turn on some light jazz.  This isn't the sort of thing to do while watching a sitcom or cooking dinner because you'll really need to concentrate!  Boring as it sounds, you'll need some quiet time to take it all in, so maybe when the kids are napping, or nestled into their little beds for the night...these would be good times to read this document and any addenda.

Pay careful attention to the section titled Exclusions.

Be careful not to assume that just because you see your upcoming treatment or surgical procedure listed there that you'll never receive an approval.

Be sure to request any denial be made in writing, so that you can analyze the company's reasoning behind the action (or inaction).  They should reference specific verbiage in the Evidence of Coverage as explanation for the denial.

By requesting the denial in writing, you are also establishing the timeline for appeal.  Check the Evidence of Coverage to determine how many days you have to submit your first appeal, and the precise procedures you must follow.

Two of the most common problems in interpreting the Evidence of Coverage are:

Exclusions for dental conditions

Exclusions for cosmetic procedures

Let's address each individually...

Exclusions for Dental Conditions

Your rebuttal:

Surgical procedures for patients with clefts and/or other craniofacial conditions are required due to a medical condition (i.e., the congenital defect).

The key here is to stress in your (or your doctor's) correspondence that the procedure is medically necessary.  State in your letter that there are no dental procedures that will repair the condition in question.  This applies to orthodontics and orthognathic surgery, as well.

Part of the problem lies in that many orthodontists and oral/maxillofacial surgeons submit their standard dental paperwork.  You've probably seen and even signed the claim form, with its diagram of the mouth and teeth and simple explanation all on one page.

Most health insurance companies will rubber stamp the claim and send it back with a form letter stating "No Dental Coverage" or words to that effect.  In fact, this type of claim rarely makes it past the receptionist's desk...they see the dental diagram and the claim stops there!  (You didn't think they actually read the form, did you??!!)

If the care coordinator at the doctor's office presents you with this denial, insist that they re-submit the claim with a cover letter outlining medical necessity.

Of course, basic dental care for cleaning and caries would most likely be excluded from a medical policy.  Refer to your dental policy, if you have one.  Remember that routine dental care is very important, but is not considered extraordinary care.

Exclusions for Cosmetic Procedures

Your rebuttal:

Get out your pen!  It's always best to put your rebuttal in writing.

You are not asking the insurance company to pay for a frivolous cosmetic surgery so your son can have a nose job or your daughter can enhance her figure (you get the picture...).

The following definitions have been adopted by the American Medical Association (AMA) and the American Society of Plastic Surgeons (ASPS):

Reconstructive surgery is performed on abnormal structures of the body, caused by congenital defects, developmental abnormalities, trauma, infection, tumors, or disease. It is generally performed to improve function, but may also be done to approximate a normal appearance.

Cosmetic surgery is performed to reshape normal structures of the body in order to improve the patient's appearance and self-esteem.

DO NOT use the following words in any of your correspondence or phone calls:


While the procedure in question will probably enhance the way you or your child looks and the way the patient might feel about him- or herself, these three words will actually send up a red flag and probably prompt yet another denial.

Don't get us wrong...these are VERY important things.  However, that verbiage will work against you, not for you, in a rebuttal letter or at a grievance hearing.

Here's what to convey...

For instance, in the case of orthognathic (jaw) surgery, we're talking about:


These are actions most people do normally without a second thought.  But for a person with a cleft or other craniofacial condition, any or all of these can be painful and/or near impossible.  So if you're a parent, put yourself in your child's shoes and describe to the insurance company why this isn't a cosmetic procedure.  If you're an adult, describe in depth how treatment and/or surgery will improve your ability to accomplish these simple everyday tasks essential to your quality of life.

A common obstacle to insurance approvals is the customer service representative.  This administrative person, usually reached by calling your plan's toll-free phone number, is very rarely familiar with complex health care issues of any kind.  Additionally, you may get a different customer service rep every time you contact the company, resulting in even more frustration as you have to tell your story over and over again.

So as early as the first denial, request the company assign a complex care case worker to your case.  This person will then become your single point of contact with the insurance company.  They can take more time to learn about the particulars of your case.  Be prepared...they may ask you and/or your doctor for photos and additional information, and they may even accompany you to the doctor's office.  Case workers often do their own research on the internet, so make sure they visit the cleftAdvocate website!

The real key to getting an insurance approval is to fully understand your or your child's condition.  Educate yourself and don't forget...

You need ammunition....

Parameters for Evaluation and Treatment of Patients
with Cleft Lip/Palate or Other Craniofacial Anomalies
American Cleft Palate-Craniofacial Association
May 1993, Rev. 2009

Standards for Cleft Palate and Craniofacial Teams
Developed by the American Cleft Palate-Craniofacial Association and Cleft Palate Foundation
Administered by the Commission on Approval of Teams

Your Guide To The Appeal Process
From the Patient Advocate Foundation

Sample Denial Letters

Sample Appeal Letters

What To Expect At A Grievance Hearing

Sample Presentation To Grievance Committee

More Sample Letters From Cleft Advocate Families

Position Papers from the American Society of Plastic Surgeons (ASPS)
Cleft Lip and Palate Surgery
Nasal Surgery
Reconstruction of Abnormal Appearance
Scar Revision
Orthognathic (Jaw) Surgery

Position Papers from the Coalition of California Cleft and Craniofacial Teams

General Specialty
Continuity of Care
Non-Physician Services
Pre-existing Condition
Staged Surgical Procedures
Team Care
Team Leader
Team Review
Surgical Specialty
Audiology Services
Ear Nose Throat
Genetic Counseling
Maxillofacial Surgery
Nursing Services
Pediatric Dentistry
Pediatric Pulmonology
Plastic Surgery
Prosthetic Treatment
Speech Services
Speech/Language Pathology

Insurance Coverage:  A Patient's Guide
From the ASPS

A Consumer Guide to Handling Disputes with Your Employer or Private Health Plan, 2005 Update

ICD-9 Billing Codes

CPT Codes

Sample Insurance Policy Coverages and Exclusions

Guidelines for the Preauthorization of Therapy Services for
Children with Special Health Care Needs (CSHCN)
Developed by the Department of Pediatrics, University of Arkansas
for Medical Sciences

Getting Your Employer to Cover Speech-Language and Hearing Services
A checklist for consumers from ASHA (American Speech-Language-Hearing Association)

Simply put, the key to winning your case is knowing your policy, knowing your rights and being persistent.

Be sure to keep notes on each and every phone call, and keep copies of every piece of correspondence between you, the insurance company, the human resources department and/or insurance broker...anyone involved with the case.  Copy anyone and everyone...this creates a "checks-and-balances" situation on their end.

If you require further assistance, feel free to e-mail cleftAdvocate.

Likewise, if you can add information in the form of appeal letters, links to website information, anything to help others in this situation, please contact cleftAdvocate.

Working together, we can win these battles
on behalf of our children!

More Insurance Information

State Insurance Commissions
A cleftAdvocate page

Check state mandates
Know Your Continuation of Health Coverage (COBRA) Rights
COBRA Frequently-Asked Questions (FAQ)
HIPAA - Your right to health insurance portability; FAQ from the US Department of Labor

HIPAA Privacy Regulations
U.S. Department of Health and Human Services Office for Civil Rights
HIPAA Insurance Protections
U.S. Department of Health and Human Services Centers for Medicare and Medicaid Services

What your health insurer doesn't want you to know
By Vicki Lankarge

Continuity of Care/Transitional Care Form
How to continue care when you change health care plans

Hill-Burton Free and Reduced-Cost Health Care

Hill-Burton Facilities in Your State

Insure Kids Now!
If you're working but uninsured, and don't qualify for Medicaid, your child will probably qualify for CHIP

GAO Report Criticizes HHS Waivers of SCHIP Rules

State Medicaid Programs
Toll-free numbers for every US state and territory

Managed Care & Children With Chronic Illnesses or Disabilities
An excellent article from Exceptional Parent Magazine

Consumer Guides for Getting and Keeping Health Insurance
Georgetown University Institute for Health Care Research and Policy

Supreme Court Limits HMO Rights Under ERISA

More Than A Movie (Video and Audio Clips)
The PBS NewsHour with Jim Lehrer takes a look at the movie John Q
Did you know...

The following states have mandated health benefits for cleft palate**

California (Read Section 10128.3)  (Read Section 10123.88)
Colorado (Read CRS 10-16-104)   Connecticut (Read Public Act 03-37)
Florida (Read Statute 627.64193)  (Read FL Statute 641.428)  (Read FL Statute 641.31094)
Indiana (Read IC 27-8-5.6-2Louisiana (Read RS §215.8)
Maryland (Read  (Read
Minnesota (Read Statute 62A.042) (Read Statute 62A.304) New York (Read Regulation 62, 11 NYCRR 52.16)
North Carolina (Read Statute §58-51-30) South Carolina (Read Title 38-71-240)
Texas (Read 1367.153)  Vermont (Read § 4089g)
Virginia (Read Code §38.2-3411)  Wisconsin (Read Statute 632-895 Par. 5)

Can we add your state?  E-mail us at  cleftAdvocate

**Informational purposes only.
Always check with your state insurance commission to verify mandated benefits.
We subscribe to the HONcode principles of The Health On Net Foundation
© cleftAdvocate
All Rights Reserved
This cleftAdvocate page was last updated July 24, 2014
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