Five Regions
This program, supported financially by the Florida Legislature through the Florida Department of Health, has established family networks at the local level throughout the state.
Each Region has one or more Coordinator(s) who are the parents of a child with a cleft or craniofacial malformation and/or are professional knowledgeable about cleft care.
Program Activities
Through the cooperative interaction between regional coordinators and the “home office” at the UF Craniofacial Center, the Network is able to provide parents of newborns and professionals the following:
- Distribution of specialized feeding supplies (bottles and nipples)
- Informational publications (in English and Spanish) such as: “How to Feed Your Newborn Baby with a Cleft Palate,” “Speech Development for a Child with a Cleft Palate,”
- A system for acquainting parents of newborns with the services available to them has also been established. “Hotlines” for families and professionals
Weekend Camps
The Network also provides two annual week-end camping programs for the families of children who are experiencing psycho-social problems associated with facial disfigurement:
- Boggy Creek Camp located just north of
Orlando
(this year’s camp held in April included 32 families) and dozens of counselors.
- Camp Nova at Nova University in Ft. Lauderdale is scheduled this year for June.
Continuing Education
The Florida Cleft and Craniofacial Network recently conducted a survey of team members, including SLPs, serving on cleft and craniofacial programs in
Florida
.
This survey revealed that although all specialists indicated the desire for additional training, the most pressing needs noted were in speech, genetics and surgery.
In part, as an outcome of the findings from this survey, the Family Cleft and Craniofacial Network program now offers half-day, day-long, two-day, and a six week course in “Care and Treatment of Persons Born with Cleft Lip/Palate or
Other Craniofacial Malformations” for SLPs and other professionals. Topics designed especially for SLPs include:
- “Hands-on Training in Assessing Velopharyngeal Insufficiency of Dysfunction for Speech Using Videofluoroscopy
- “Training in Assessing Velopharyngeal Dysfunction for Speech with Video Fiberoptic Nasendoscopy
Assessment of SLP’s Needs
A statewide survey of perceived needs by speech-language pathologists and other professionals to more optimally handle the issues (surgical, dental, speech and psychological) facing patients with craniofacial differences was recently conducted. Nearly every SLP that responded noted the need for more formal training in the areas of diagnosis (especially in perceptual and instrumental such as Nasometry, fluoroscopy and nasendoscopy), and specific speech therapy techniques for children with severe articulation disorders associated with VPI.
Future Growth
This program is currently attempting to identify further statewide needs for persons with craniofacial malformations and their families. A week-long Speech Camp which has been initiated by the UF Craniofacial Center, and has demonstrated the benefit of intensive day-long therapy over a week. This speech camp may provide the model in replicating similar camps throughout the state during the summer when children are most likely to have free time to enroll in such a program.
Contact Information:
Florida
Cleft and Craniofacial Network
www.cleftnetwork.com
P O Box 100424
,
Gainesville
,
FL
32610-0424
Telephones: 352-846-0801, 352-392-1635
Toll free 1-800-726-2029
FAX 352-846-1539
E-mail: craniofacial@dental.ufl.edu
