Understanding Cleft and Craniofacial Conditions: Why JulyAwareness Matters

Every July, the disability and medical communities come together to observe National Cleft and Craniofacial Awareness and Prevention Month. It's a time to educate the public, support families, and celebrate the resilience of the thousands of children and adults living with these conditions.

What Are Cleft and Craniofacial Conditions?

Cleft lip and cleft palate are among the most common birth defects in the United States. The CDC estimates that about 1 in every 1,031 babies is born with a cleft lip, with or without a cleft palate, and about 1 in every 1,563 babies is born with cleft palate alone — together, roughly 7,000 U.S. babies each year. Craniofacial conditions extend beyond these to include a range of differences in the structure of the skull and face — some present at birth, others resulting from injury, illness, or disease. While treatable, these conditions often require a lifetime of coordinated care.

A Journey That Doesn't End in the Operating Room

A single cleft repair rarely tells the whole story. Many individuals need a series of surgeries stretching from infancy through the teenage years, alongside speech therapy, orthodontics, hearing evaluations, and psychological support. Each stage carries its own costs, appointments, and adjustments — not just for the individual, but for the whole family.

Why This Matters to Shared Horizons

At Shared Horizons, we work every day with families navigating exactly this kind of long-term care. Many children and adults with craniofacial conditions qualify for Medicaid or Supplemental Security Income (SSI) to help cover medical and daily living expenses. But those same benefits can be jeopardized by even modest savings or a well-meaning gift from a relative.

That's where a Special Needs Trust comes in. By placing funds in a properly structured trust, families can pay for extras that public benefits don't cover — travel to a specialist, a communication device, tutoring — without putting essential benefits at risk.

How You Can Help

This month, we encourage you to learn more about cleft and craniofacial conditions, support organizations doing this work, and share accurate information with your community. And if you're a parent or caregiver wondering how to plan for your child's long-term financial security, we're here to help.

Contact Shared Horizons at (202) 448-1460 or info@shared-horizons.org to learn more about our Special Needs Trust options.

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Sources

1. Centers for Disease Control and Prevention — Cleft Lip and Cleft Palate — https://www.cdc.gov/birth-defects/about/cleft-lip-cleft-palate.html

2. American Academy of Otolaryngology–Head and Neck Surgery — National Cleft and Craniofacial Awareness and Prevention Month — https://www.entnet.org/about-us/campaigns/national-cleft-and-craniofacial-awareness-and-prevention-month/

3. Social Security Administration — Who Can Get SSI — https://www.ssa.gov/ssi/eligibility