In this article, Ability Central will address your long-term care and support questions for families who have a person with a cleft lip or palate. These questions include:
What is the average cost of care for cleft lip and cleft palate?
What medical and financial aid programs assist people with cleft lip and palate?
What are the communication challenges associated with cleft lip and cleft palate?
What mental health issues are associated with cleft lip and palate?
Where can I find support groups for someone with a cleft and their caregivers?
Where can I find more information about cleft lip and palate?
What is the average cost of care for cleft lip and cleft palate?
The most recent data on lifetime costs associated with cleft lip or palate is from 1988. At that time, the average lifetime expected cost for cleft care was $101,000.
What medical and financial aid programs assist people with cleft lip and palate?
The Children’s Cranial Facial Association (CCFA) has a financial assistance program to help with food, travel, and lodging while a family seeks cleft care. To learn more, see their website.
Smile Train assists people with cleft lip and palate outside the United States.
Operation Smile offers care within the United States and globally.
In addition, see the following government-sponsored resources.
Medicare covers people with permanent disabilities and those 65 years old or older.
Medicaid covers people with disabilities who have lower incomes. Some aspects of cleft treatment coverage vary by state.
The Affordable Care Act (ACA) may also assist those who qualify.
If a child with a cleft lip and palate was born to a woman who served in the Vietnam War, the Veterans Administration (VA) has a program that can assist.
What are the communication challenges associated with cleft lip and cleft palate?
A cleft lip or cleft palate can affect speech and language skills, including:
Articulation: the physical production of the sounds that create spoken words.
Receptive language: understanding words spoken by others.
Expressive language: being able to express thoughts through words and sentences.
Voice: the sound that results from the vibration of the vocal cords.
Resonance: the result of the transfer of sound produced by the vocal folds through the vocal tract.
These communication challenges result from three concerns associated with cleft lip and palate. They are:
Problems in the mouth and alignment of the teeth.
Hearing loss is associated with problems in the Eustachian tube that connects the middle ear with the nasal-sinus cavity.
About 33% of patients with cleft palate experience velopharyngeal insufficiency (VPI).
To learn more about speech-language challenges and communication disorders, see Ability Central’s speech-language library.
What mental health issues are associated with cleft lip and palate?
Research shows that a high percentage of children with cleft lips and palates underperform in school, have higher concerns for their appearance, and experience decreased parent and teacher expectations.
Combining this with the increased likelihood of cognitive deficits like dyslexia and dysphasia, mental health specialists and a Speech-Language Pathologist (SLP) should be included on the care team.
To learn more about suggested care team members, see Symptoms and Early Signs.
Where can I find support groups for someone with a cleft and their caregivers?
Ability Central houses a searchable database of non-profits that specialize in connecting parents of a child with a cleft lip or palate with the resources you need, including:
Support groups
Financial assistance
Connecting with specialists for your care team.
You can find additional resources through the American Cleft Palate Craniofacial Association (ACPCA).
Where can I find more information about cleft lip and cleft palate?
For more information about cleft lip and cleft palate, see:
Additional Information
The content provided in this article is for informational purposes only and is not intended as a substitute for legal, medical, or other professional advice. While we strive to provide accurate and up-to-date resources, some information may become outdated or incomplete. Always consult with your provider about personal medical concerns.
