By Susan Barbey

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 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.

Download the Insurance Tool Kit 

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.

Download Statutes on Congenital Anomalies by State

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 the National Foundation for Ectodermal Dysplasias (NFED).

They have staff and volunteers who can offer support.

– Susan Barbey is a Former Health Insurance Analyst/State Relations & Compliance.  She shares her health insurance knowledge with the NFED and families in need. Marci Barbey and Susan Barbey are sisters-in-law.

25 comments on “Health Insurance Claims and Teeth 101”

  1. 1
    Ana Andrew on April 19, 2017

    Thanks.Valuable information

  2. 2
    Jana George on April 22, 2017

    Excited to persue. Thank you😊

  3. 3
    Samantha on May 3, 2017

    This is a great news. Thanks for sharing!

  4. 4
    Nick Aniotzbehere on June 12, 2017

    Thanks for sharing… I feel we may have trouble with our ERISA plan that (surprise!) doesn’t cover missing teeth. ( We already received an auto-denial for proposed dentures.

    Hopefully it turns out OK, and we will definitely take your advice and use the techniques found herein. Hopefully the employer will cover, but if not, we will likely appeal as far as possible, just on principle.

    1. 5
      Susan Barbey on November 19, 2017


      I just noticed you included a copy if your SPD. Smart. I just whizzed thru it. Covered. If you send me your email address–I’ll email you a pdf of your SPD where I highlighted where the coverage is. Maybe you’ve already won benefits.


  5. 6
    Firdous Sawab Khan on March 7, 2018

    My Daughter is effected ectodermal dysplasias she is just 5 Years old i stay India. please help me

    1. 7
      Jodi Edgar Reinhardt on March 7, 2018

      Thank you for reaching out to us and telling us about your daughter. Please fill out this form at so that we may send you information to help you. We look forward to receiving it! Also, tell us what type of help you are needing. Thank you. Jodi, Director, Marketing and Communications, National Foundation for Ectodermal Dysplasias.

    2. 8
      Susan on November 30, 2018

      My name is Susan and I read a lot about health insurance visa vi congenital anomalies and TEETH. I’ve been reading for sometime now about what’s going on in your country. I don’t know your health insurance system. I do know that there’s a lot of work going on right now for those who do carry health insurance regarding congenital anomalies and TEETH. My suggestion is the from time to time you Google: “congenital anomalies and TEETH in the news” and stay on top of what’s going on. Good luck.

      Here’s an Article for you. There are many. Good luck.

  6. 9
    Donald Brown on June 27, 2018

    My wife and children both have ectoderm dysplasia. My sone has serious teeth issues. Is there any help available?

    1. 10
      Jodi Edgar Reinhardt on June 28, 2018

      Hi, Donald. Thank you for reaching out to us about your family. We do offer a Treatment Assistance Program which you can learn more about here: We also have a network of Dental Treatment Centers which you can find here: If you have not already done so, I encourage you to fill out this form so we can provide you with more information and access to programs we offer: We hope this helps. Give us a call. We’re happy to help and talk to you. Our NFED office number is 618-566-2020. ~ Jodi, NFED Director, Marketing and Communications

  7. 11
    Dentist in Concord on October 10, 2018

    Nice post! The type of health insurance you have matters a lot. Now a days people should get a health insurance after taking all the necessary information regarding that. I think an affordable as well as a beneficial insurance is better to be adopted. Thanks a lot!
    Dentist in Concord

  8. 12
    Angela Elliott on October 31, 2018

    Hi. Thank you so much for the information! My daughter Audrey (17) has HED and has Medicaid. Any tips with Medicaid would be greatly appreciated. We are in Colorado. Missing 17 adult teeth. Denied ortho but I don’t think they coded it right. It came back as “not enough of a malocclusion” if you can believe that!

    1. 13
      Susan Barbey on January 11, 2019

      Hello: My name is Susan and I wrote this Post. I see you live in CO and your daughter has Medicaid. I believe that Medicaid (a federal program administered by the States) provides necessary medical care and treatment to restore/improve function of missing/malformed body parts due to congenital anomaly. (Medicaid benefits are quite liberal/broad). Call them. Tell them that your daughters medical dx code is: Q82.4 You/the physicians must use this DX Code and Medical Billing Codes (not dental codes). Where there isn’t a medical Billing code–use the universal code docs have available to them. Read this Post and imbedded Downloads. Educate yourself and you will get this care paid for.

  9. 14
    Deena on February 14, 2019

    My son has 13 missing teeth of which 7 need to be filled in for. The others still have the baby teeth occupying the space. He currently wears retainers with poetics for both upper & lower. His jaw bone is too thin and therefor implants are not recommended without bone grafting, What I want to know are a few things. What specific genetic tests should I have him tested for? He is now 19 and is covered my group employer insurance is there any possibility of having the medical cover what dental does not? The insurance is Aetna HMO for state of MD. If so what codes/diagnosis would qualify if so. What are the other permanent procedures besides bone graft implants to correct the missing teeth? And are there any providers or special foundation funds/grants that can be applied for to either pay or supplement part of the cost. Is there any providers that specialize in the cases of Oligodontia? He has has the spaces created by orthodontic work in order to get the next step done we had to wait for the jaw to fully developed which now has. We want to get treatment and can pay for part of the work or all depending on the price for treatment but it seems most dentist out here are so unfamiliar with the in depth of Oligodontia and we are being extra conservative as to just jumping into a treatment plan because everyone has something different to say. I need a expert and additional resources to either get my medical to supplement the dental coverage or a real expert that knows these type of cases.

  10. 15
    Deena on February 14, 2019

    sorry for the typos.

  11. 16
    Susan on February 16, 2019

    Hello Deena: I’m not qualified to comment on medical questions. What I can say is that if your son has been diagnosed by a doctor with a birth defect causing his oral health problems, then I urge you to read Heath Insurance Claims and Teeth Blog and follow the instructions. All of the insurance assistance you need is in there. It’s hard work but if you stick with it you can win. Good luck to you. Best, Susan

    1. 17
      DEENA on February 16, 2019


  12. 18
    Susan on February 16, 2019

    Deena: Please note that the laws that apply to you are the laws of the State that the Group Policy was issued in/SOLD in. This may be different then the state you live in (MD). Read the Blog. All you need is in there. Again, good luck

    Maryland Section 15-401

    15-401 (e) (f): Coverage for a newly born or newly adopted child or grandchild or a minor for whom guardianship is granted by court or testamentary appointment shall consist of coverage for injury or sickness, including the necessary care and treatment of medically diagnosed congenital defects and birth abnormalities.

  13. 19
    Kelley on February 21, 2019

    Hi, Deena.

    It would be great if we could connect by email and/or phone to discuss your questions in further detail. I can be reached at or 618-566-6873.

    Meeting with a geneticist is the first step in determining a diagnosis for your son. A geneticist will determine a clinical diagnosis based on your son’s symptoms. Once the clinical diagnosis has been determined, they can identify if testing is available.

    Yes, it is possible for medical coverage to cover the related costs. Please read and become familiar with the information on our insurance page to walk you through this process.

    I look forward to hearing from you.

  14. 20
    Daria on March 16, 2019

    Thank you so much for the info. I’m a carrier of HED and have Blue Cross Blue shield HMO NY insurance who denied me. I believe the coding was made wrong is there anything I can do?

    1. 21
      Jodi Edgar Reinhardt on March 18, 2019

      Hi, Daria. Please email Kelley on our staff at or call her at 618-566-2020. She can answer your question and help you with this process. ~ Jodi, NFED, Director, Marketing and Communications

  15. 22
    Chris on June 25, 2019

    We have a 3 year old son with HED and conical teeth and our Insurance Carrier (Blue Cross NY) denied our pre-auth. We were told to appeal and are gathering policy docs (which state congenital anomaly as exempt from their Exclusions) Where in NYS law should I find the requirement to cover? There’s a lot out there….I’m hoping to pinpoint for the appeal.

    1. 23
      Jodi Edgar Reinhardt on June 26, 2019

      Hi, Chris. You ask a good question. Becky Abbott from our staff is going to reach out to you with information to help you. You can reach her directly at or 618-566-2020. ~ Thanks, Jodi, NFED, Director, Marketing and Communications

  16. 24
    Franklin White on August 12, 2020

    Thanks for pointing out how you are protected by the state the insurance policy was sold in but not the one you live in. I am moving to a different state next month. I’ll try and get insurance their so I’ll be protected by that new state.

  17. 25
    medicalbiller on August 25, 2020

    Hay Susan! Very well mentioned. I now read your article and get it valuable. Being a professional medical billing expert, I can understand that following these instructions can help providers to mark revenue challenges including more knowledge. I will go through this article again.
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