Financial support for cleft treatment can present a challenge to an adult patient, since standard health insurance companies often reject claims for treatment. There are a number of strategies to determine what financial resources are available, how to access these resources, and how to deal with denials/refusals for treatment:

1. Meet with your cleft team and ask its members to provide an updated, coordinated treatment plan.
2. Be prepared to document every phone call/contact you make regarding insurance coverage. Write down the person’s complete name, date, time of contact, and a brief summary of your conversation. This documentation may be needed to support your claim.
3. If you have a private insurance plan (private indemnity, PPO or HMO) the following suggestions may be helpful:
   • Read your policy thoroughly, then contact your insurance/ benefits representative.
   • If you are told there are no benefits available for the requested services, ask to speak with the department manager. Don’t take NO for an answer yet. Offer to provide any information that would support your request for services. Keep going. If you are still denied, ask for the denial in writing from the company. Offer to send the clinic report, physician letters, and any other documentation supporting the need for treatment. Use the ACPA Parameters for Evaluation and Treatment document to help support your claim.
   • If your claim is denied by the benefits division, ask to speak to a case manager. This person is usually someone with a medical background who reviews individual cases. Try to find one person who seems to want to help you.
   • Continue to ask for denial in writing if this has not been sent to you.
4. If you are still denied/refused approval for treatment, consider the following:
   • Ask your doctor for names of other adults who have appealed for services. They may provide valuable help and support.
   • Contact your state insurance commissioner to submit an appeal.
   • Find out if there is a state advocate or ombudsman in your state who may be helpful.
   • Seek help from your State Commission on Persons with Disabilities.
   • Seek assistance from a state-level vocational rehabilitation office.
   • Write letters to the insurance company or insurance commissioner appealing the decision. Be sure to keep copies of all correspondence.
5. Consider contacting one or more of your state legislators. They may be interested in your situation and may be able to provide assistance for you.
6. Be persistent. The process may take time and energy, but you may succeed in getting the treatment you want and need.

Citations:

American Cleft Palate Craniofacial Association. Information for Adults. ACPAcares.org. Accessed September 1, 2024. https://acpacares.org/resource-center/.

American Cleft Palate Craniofacial Association. Parameters of Care For Evaluation and Treatment of Individuals with Cleft Lip and/or Palate and/or Other Craniofacial Conditions. ACPAcares.org. Published February 14, 2025. Accessed February 14, 2025.

https://acpacares.org/wp-content/uploads/2025/02/2024-ACPA_ParametersOfCare_Final.pdf.

Page reviewed by Sarah B. Vetter, MS, CCC-SLP, MAEA; ACPA Family Resources Committee