The Otolaryngologist’s Role in Advocacy for Children and Families with Cleft and Craniofacial Differences

Ryan H. Belcher, MD, MPH, Scott Owen, MD, and Zahrah M. Taufique, MD, MBA, on behalf of the Otolaryngology Cleft and Craniofacial Committee

The otolaryngology-head and neck surgery specialty has a storied role in caring and advocating for patients with cleft and craniofacial differences over the past 150 years. The care model for many patients with cleft and craniofacial disorders has shifted over these years to emphasize the benefits of coordinated multidisciplinary care, which improves outcomes and allows for proper timing for their needed surgeries.¹

The otolaryngologist plays a central role in multidisciplinary cleft and craniofacial care. The American Cleft Palate Craniofacial Association (ACPA) standards require an otolaryngologist as part of every accredited Cleft Palate and Craniofacial Team, whether as a consultant or as the surgeon performing primary cleft lip/palate repairs. Beyond formal team settings, the significant audiologic, speech, and surgical needs of this population mean that otolaryngologists will frequently encounter these patients in their practice settings as well.

Specialty’s Role for Advocacy

Our specialty’s core role in the communication sciences also places us in a strong position to advocate for this patient population. Advocacy comes in many forms, whether through peer education, camps for families with cleft lip/palate, committee involvement, academic publications, state or federal legislation, or even at the individual patient level. Members of the AAO-HNS Otolaryngology Cleft and Craniofacial Committee regularly participate in these advocacy opportunities.

Vanderbilt Pediatric Cleft and Craniofacial Program’s Family Fun Day at the Nashville Zoo. Pictured are cleft surgeons, Jim Phillips, MD, and Ryan H. Belcher, MD, MPH, as well as one of their pediatric plastic surgery colleagues, Michael Golinko, MD.

Other resources for families and patients are produced by ACPA, which provides access to these resources for families presenting with a new diagnosis of a craniofacial disorder. This includes information on feeding a baby with cleft lip/palate, speech and hearing therapy, how to approach the school-aged years, and how to find a multidisciplinary team to address your needs. myFace is another organization that provides resources for the craniofacial community, including topic-specific webinars, workshops, and online content, and strives to raise public awareness of craniofacial differences. For those who participate in humanitarian global surgery initiatives for children with cleft lip/palate, the NGO Smile Train has provided speech-related resources in a wide variety of languages, enabling families to learn cleft speech strategies and practice their child’s speech skills at home.

Legislative Wins for Patients

Accessing timely and effective multidisciplinary services has historically been difficult for many families with children needing care for cleft and craniofacial disorders. This includes hurdles such as specialist deserts, insurance denials for treatment such as orthodontics, and out-of-state bureaucracy. Fortunately, recent legislative victories and ongoing advocacy are finally beginning to bridge the gap between medical necessity and insurance coverage. Over 40% of U.S. counties do not have an approved craniofacial team within a 100-mile radius. For rural families, a 15-minute follow-up can mean an eight-hour round-trip drive often across state lines, leading to high "care fatigue" and missed appointments during critical growth windows.

Signed into law on February 3, 2026, the Accelerating Kids’ Access to Care Act (part of H.R. 7148) is a bipartisan breakthrough for children on Medicaid and CHIP. Previously, if a child needed a specialist across state lines, the out-of-state doctor faced months of duplicative paperwork to enroll in the child's home-state Medicaid system, causing significant delays for time-sensitive surgeries. This law creates a streamlined national pathway, allowing pediatric providers in good standing to treat out-of-state children without redundant screenings. Practically speaking, this means families can reach the nearest Center of Excellence faster, ensuring infants receive critical surgeries and specialized therapies during the ideal developmental windows, regardless of state borders.

The Ensuring Lasting Smiles Act (ELSA) was reintroduced with bipartisan support in the 119th Congress (2025 - 2026); however, it is still pending. This legislation aims to close a notorious insurance loophole that leaves families of children with congenital anomalies facing financial barriers to critical craniofacial treatments. Currently, most private insurers cover initial medical surgeries (e.g., closing a cleft lip) but deny subsequent, critical treatments—such as orthodontics, bone grafts, and dental implants—labeling them “cosmetic” or “dental.” Because the mouth and teeth are involved, insurers use these categories to shift the cost to families, even when the procedures are functional. ELSA would legally mandate that all health plans cover any medically necessary service required to repair or restore function lost due to a birth defect. It ensures that a child's doctor, not an insurance adjuster, determines what care is essential for the child to thrive.

The Affordable Care Act (ACA) serves as the essential federal foundation, ensuring that children born with cleft lip or palate cannot be denied coverage due to a pre-existing condition. It further classifies pediatric oral and vision care as essential health benefits. However, because federal law often stops short of mandating specific craniofacial reconstructions, a patchwork of state mandates acts as a secondary safety net. Over 15 states now require private insurers to cover medically necessary cleft-related treatments, including orthodontics. While these state laws provide a vital lifeline, they currently do not apply to “self-insured” employer plans, leaving the federal ELSA Act as the necessary final piece. The AAO-HNS has an active Advocacy team that represents our members in these legislative matters, but it is still imperative that our specialty reach out to our political representatives to support these measures so that these families and affected children can receive their much-needed care.

Otolaryngology and Cleft Lip/Palate Patient Intersection

The average patient born with cleft palate sees an otolaryngologist 8.2 times before their fifth birthday, requires 3.3 sets of tympanostomy tubes, and has a better-than-not chance of needing another otologic or upper airway procedure performed by an otolaryngologist, such as tonsillectomy, adenoidectomy, or tympanoplasty.^2,3 It is hard to argue against the essential role an otolaryngologist has in cleft and craniofacial patient care.

While many patients have access to a major medical center with a multidisciplinary cleft clinic, geography, convenience, or patient preference may warrant the involvement of an otolaryngologist outside of a cleft care team. For many, the caliber of their care will likely depend on their otolaryngologist’s ability to manage and triage ongoing head and neck issues.

Fortunately, this is what we’re trained to do. We share our clinics with audiologists and speech-language therapists, and we lead head-and-neck tumor boards and attend PICU care conferences for complex pediatric airway patients. While not all otolaryngologists repair primary clefts, the management of middle ear disease, sleep-disordered breathing, velopharyngeal insufficiency, or nasal deformity can fall squarely into our expertise.

The importance of multidisciplinary care is highlighted throughout this article and should not be minimized. However, the likelihood that cleft patients may be impacted outside of this setting is high. Otolaryngologists will always play a uniquely important and consistent role in the care and advocacy of these patients. This necessitates high-quality training in cleft and craniofacial care at our academic centers and an emphasis on competency checkpoints for trainees. We must stress longitudinal care over spot surgical contact both in our current practices and on medical missions. Training must focus not only on primary lip and palate care, but also on other likely areas of contact, such as speech surgery, identification of comorbid congenital issues, management of chronic middle ear dysfunction, and definitive rhinoplasty to improve long-term outcomes for these patients.

Leadership from our professional organizations, such as the AAO-HNS, ACPA, and others, remains essential, providing guidelines and essential resources for physicians and families. Our AAO-HNS has visualized the importance of our specialty and has created the Otolaryngology Cleft and Craniofacial Committee. Expanding comfort in cleft care among otolaryngologists not only allows for higher-caliber cleft teams but also a more competent surrounding community that patients will likely contact. This improves access to care and the earlier identification of complex patients who necessitate referral.

As otolaryngologists, we have a unique understanding of head and neck pathology. Our training not only prepares us to make a meaningful impact on patients with cleft lip and palate, but also to interface with adjacent specialties that offer significant benefits to our patients. Today, that role also extends to include advocacy. Together, we can ensure that patients and families have access to the multidisciplinary care and resources necessary to achieve the best possible care.

References

1. Praveen H, Dorjsuren N, De Oliveira N, Braun S, Galdyn I, Golinko M, Pontell M, Phillips JD, Belcher RH. Cleft lip/palate multidisciplinary team effectiveness on appropriate surgery timing and improving disparities. Int J Pediatr Otorhinolaryngol. 2026. Epub 2025 Dec 12. DOI: 10.1016/j.ijporl.2025.112676
2. Kenneth R. Whittemore Jr, M., MSc1,2, Jenna M. Dargie, MS1, Briana K. Dornan, AuD, CCC-A1, and Brian Boudreau, PA-C, MPAS1 (2018). "Otolaryngology Service Usage in Children With Cleft Palate." The Cleft Palate-Craniofacial Journal 55(5): 743-746
3. Ursula M. Findlen, P., 2 , Anna Meehan, AuD3,4, Gregory Allen, MD5 , Deborah S.F. Kacmarynski, MD6, Jonathan Grischkan, MD2,, et al. (2025). "Current Ear and Hearing Care Practices for Infants and Toddlers with Cleft Palate in the United States." The Cleft Palate Craniofacial Journal 62(11): 1910‐1918.