Not sure where to begin when it comes to your health insurance and covering ectodermal dysplasia-related dental treatment? Susan Barbey, a former health insurance regulatory and compliance analyst, put together the following set of rules to help you navigate the claims process from start to finish. Susan is the sister-in-law of Marci Barbey, the author of our Insurance Tool Kit!

Rule 1

Know What Kind of Health Insurance You Have

  • Individual health insurance policy, or
  • Group health insurance through employer

Rule 2

If You Have Group Health Insurance Through An Employer, Call Your Plan Administrator and Ask The Following Questions

  • Is this health insurance an insured-plan (sold by a licensed insurance company)? If yes, what state was the policy sold/issued in? Have them send you a copy of the policy.
  • Is this health insurance a self-insured/self-funded employer-sponsored health benefit plan? (Note: Large companies don’t buy insurance. They self-insure/self-fund. The employer and employees contribute money and all claims are paid from that one common pool of money). Have them send you a copy of the policy.

Rule 3

Know If State Laws Protect You By The Kind Of Health Insurance You Have

  • Individual Health Insurance Policy: You’re protected by the state the policy was sold in.
  • Group Health Insurance Through Employer; Insured Plan: You’re protected by the state the policy was sold in (not the state you live in).
  • Self-Insured/Self Funded Employer-Sponsored Health Benefit Plan: These plans are exempt from state health insurance laws. They are known as ERISA plans and come under federal law. If you work for the government, your plan may be a non-ERISA plan and subject to state laws offering greater protections. Ask your plan administrator.

Rule 4

Know Thy State’s Health Insurance Laws

Call the insurance department that the individual or group policy was issued in/sold in. Find your state insurance department. Please be in front of a computer when you make this call.

Tell the person who answers that you need to speak to someone in the health insurance area. Once transferred, tell that person that you/your child was born with a rare congenital anomaly and that you want to know if the state has a health insurance law on the books that protects people born with a congenital anomaly. Give them a moment to find the law. (Most states have such a law). Write down the law. It’s a series of numbers.

DON’T GET OFF THE PHONE YET. Have them email you the law or, have them guide you to the law using your computer. When you have it in front of you, read it out loud to them. These laws generally will read something to this effect:

Wisconsin State Legislature—632.895—Mandatory coverage.

(5) (b) Coverage of newborn infants (b) Coverage for newly born children required under this subsection shall consider congenital defects and birth abnormalities as an injury or sickness under the policy and shall cover functional repair or restoration of any body part when necessary to achieve normal body functioning, but shall not cover cosmetic surgery performed only to improve appearance.

These laws generally never specify any congenital anomaly by name. The list is too long. Nor, will they specify body parts by name. The list is too long. After you have read it, ask this: My plan doesn’t cover TEETH, my affected/missing body part is TEETH. Will this law protect me? The answer will be YES.

Rule 5

State Law Doesn’t Apply – I Have An ERISA Self-Insured/Self-Funded Plan

Don’t worry. Most all self-insured/self-funded plans offer congenital anomaly protections.

Rule 6

Carefully read your health insurance policy; your employer-sponsored health benefit plan. This is critical. Know what is covered under your plan.

  • Read it front to back. Get familiar/comfortable with what’s in it (benefits; exclusions; appeals).
  • Re-read. Study everything under the Covered Benefits Section. Look for language like this: congenital anomaly, congenital birth defects, from the moment of birth, restore function, repair defect, prosthetic appliances used to replace a missing natural body part, reconstructive surgery to restore normal bodily function or to correct deformity resulting from disease.
  • Then, study everything under the Exclusions Section. Look for the Cosmetic exclusion and the exception for congenital anomaly. Look for the Dental exclusion except for accidental injury to sound natural teeth. Remember this and use it: Ectodermal dysplasia is an accident that happened in-utero (problems with teeth). People born with ectodermal dysplasias are protected under the Americans with Disabilities Act and are not to be treated differently.

Your fact-finding is complete. You are knowledgeable. You are prepared. Now you are ready to seek necessary medical and treatment for oral health care resulting from congenital anomaly. Before you seek treatment, learn everything you need to know about how to get treatment pre-approved, how to file a claim, how to file an appeal and how to get claims paid.

Rule 7

Download This Insurance Tool Kit by Marci Barbey

Read it carefully. Study it. Understand it. It will walk you through the steps you need to take to obtain pre-approval to see an out-of-network physician (i.e. prosthodontist, orthodontist, dentists are generally not in-network); how to get pre-approval for the treatment plan and how to file a post-service claim. It will also show you how to file an appeal. It includes sample letters, diagnosis codes and a list of insurance companies that have granted dental benefits under health insurance.


Rule 8

Download Statutes on Congenital Anomalies by Marci Barbey

Please refer to this invaluable resource to learn what protection states offer to protect those born with congenital anomalies.


Rule 9

Don’t Get Discouraged and Don’t Give Up

Expect that your request for pre-approval and your claim (even if pre-approved) will be automatically denied because the care and treatment involves TEETH. Just follow the instructions provided.

Rule 10

If You Need Further Assistance, Contact Us.

We have staff and volunteers who can offer support. Don’t miss our Family Roadmap and Resources, which provide additional tips for insurance success.