Services Provided

With funding from the Florida legislature, the Florida Cleft and Craniofacial Network (FCCN) provides the following services and supplies for Florida families who have children born with cleft lip/palate or other craniofacial malformations:

FCCN provides the following services:

· A toll-free hot line for parents and professionals throughout the state 1-800-726-2029

· Special Feeding bottles for families of newborns. Please request bottles by telephone or e-mail at 352-627-9326, toll-free at 1-800-726-2029 or email CraniofacialCenter@peds.ufl.edu

· Counseling pregnant women whose baby has been diagnosed with a craniofacial difference

· Assisting in communication between parents of newborn infants and hospitals, health professionals and other families

Resources

Feeding Supplies

Pamphlets and Fact Sheets available from American Cleft Palate-Craniofacial Association

As long as resources last we will also continue to provide the following items free of charge to Florida families:

· Dr. Brown's bottles, nipples and Microwave Steam Sterilizer Bags

· Medela SpecialNeeds Feeder bottles and nipples

· Enfamil Mead Johnson cleft palate nursers

· Enfamil cross cut nipples

If you would like to watch Dr. Brown's webinar "Feeding the Infant with Cleft Lip and Palate: Tools and Techniques" you can find it at: http://drbrownsbaby.com/medical/webinars

To find video on feeding a newborn with cleft palate and educational literature on care for children born with craniofacial differences please visit the website of the Cleft Palate Foundation (CPF): www.cleftline.org

Our contact information:

· Telephone: 352-627-9326, or toll-free 1800-726-2029

· E-mail: CraniofacialCenter@peds.ufl.edu

Pamphlets and Fact Sheets available from American Cleft Palate-Craniofacial Association

The American Cleft Palate-Craniofacial Association (ACPA) is pleased to provide packets of information pertaining to a range of age groups. Please view the full list, or download the packet information free of charge, from the ACPA Family Services website.

If you would like to receive packet information via email, or if you would like ACPA Family Services to mail you complimentary hard copies of the information, please call the Cleftline at 1.800.24.CLEFT, please fill out the form on the website.

English and Spanish are available

Books

Pamphlets and Fact Sheets available from American Cleft Palate-Craniofacial Association

Video and DVD

Looking Forward. A Guide for Parents of the Child with Cleft Lip and Palate. UF Craniofacial Center, 2000.
Cleft Talk for Kids. By Melissa Johnston-Burnham,LCSW. Andrea Fountain (Illustrator).
Jack's New Smile. By Ruth M Trivelpiece MEd (Author), Suzanne N West MSN (Author), Jennifer L Rhodes MD (Author), Brooke Nunez (Illustrator)
Ava the Brava. By Allie Ekblad
Your Cleft-Affected Child: The Complete Book of Information, Resources, and Hope. by Carrie T. Gruman-Trinkner (Author), Blaise Winter (Foreword).
First Place. By Kate Gaynor (Author).
Smile with Simon. By Patricia Ann Simon Rn (Author)
Comprehensive Cleft Care: Family Edition. By Joseph Losee (Editor), Richard Kirschner (Editor), Darren Smith (Editor), Christin Lawrence (Editor), Amy Straub (Editor)

Video and DVD

The Ensuring Lasting Smiles Act

Video and DVD

Every Child is Perfect. Personal Roadmaps of Experiences with Clefts. Tim Nackashi. Miles of Smiles, 2007.

Feeding your Baby. Stacy Keach. Cleft Palate Foundation, 2008.(The video can only be watched online at this link. Feeding your Baby).

Florida Legislature

The Ensuring Lasting Smiles Act

Florida State Law Regarding Insurance Coverage for Cleft Lip/Palate

· FL Statute 627.64193

· FL Statute 641.428

· FL Statute 641.31094

The Ensuring Lasting Smiles Act

The Ensuring Lasting Smiles Act (ELSA) would require all private insurance group and individual health care plans to cover medically necessary services resulting from congenital abnormalities. That coverage would include services and procedures for any missing or abnormal body part necessary to achieve normal body function, including teeth. For a breakdown of the ELSA Act click here.

Click here to see how you can help get ELSA passed.

Florida Family Support Organizations

Information Content: All materials provided by the listed websites are for information purposes only and not for medical advice.

Florida Cleft Palate-Craniofacial Association: www.floridacleft.org provides information for professionals and families about team care in Florida, as well as referrals for parent support resources.

FACE of Sarasota (Friends for Aid, Correction, and Education of Craniofacial Disorders.) Tel: (941) 955-9250

Florida Children’s Medical Services and Child Protection Teams:www.cms-kids.com
Twenty-two teams, several with satellite offices, are available throughout the state to provide specialized assessments and services to child victims and their families. Services provided may include: medical diagnosis and evaluation, medical consultation, specialized interviewing of suspected child victims, family psychosocial assessment, nursing assessment, psychological evaluation, and multidisciplinary staffing.

Florida Department of Children and Families: www.state.fl.us/cf_web
State organization helping with food stamps, possible housing, and temporary cash assistance for needy families (TANF)

WIC of Florida: wimage447
ww.doh.state.fl.us/family/wic
Federally funded nutrition program for Women, Infants, and Children. WIC provides the following at no cost: healthy foods, nutrition education and counseling, breastfeeding support, and referrals for health care

Family and Community Outreach: http://www.fldoe.org/familybr
Department of Education programs to improve student performance for at-risk students who are low-performing by providing additional learning opportunities.

National Support Organizations

Florida Family Support Organizations

AboutFace International: www.aboutfaceinternational.org and
AboutFace USA: www.aboutfaceusa.org
Organizations providing emotional support and information to people with facial differences and their families
American Cleft Palate-Craniofacial Association: www.acpa-cpf.org
American Cleft Palate-Craniofacial Association Family Services: http://www.cleftline.org
National Organizations serving healthcare professionals and patients and their families, operating the Cleftline: 1-800-24-CLEFT, and producing free publications. The Cleftline is an 800-toll free service providing information to callers about clefts and other craniofacial anomalies. Callers can request information about cleft palate/craniofacial teams and parent-patient support groups in their local region.
AmeriFace: Debbie Oliver, Executive Director, debbie@ameriface.org
Websites: www.ameriface.org, and www.cleftadvocate.org
Phone: (888) 486-1209, (702) 769-9264
Fax: (702) 341-5351
Children's Craniofacial Association: www.ccakids.com
Organization empowering and giving hope to individuals and families affected by facial differences.
Birth Defect Research: www.birthdefects.org
Organization providing information to parents and professionals about all kinds of birth defects, resources, support groups, and environmental exposures.
Binky Patrol: Comforting Covers for Kids: www.binkypatrol.org
An organization that makes blankets and gives them away to children in need of comfort, including those who are ill, abused or experiencing trauma of any kind.
Cleft Advocate: www.cleftadvocate.org
Provides information to people with facial differences and advice for families who are fighting insurance denials for their medical care.
Cuddles for Cleft: https://www.cuddlesforclefts.com/ Cuddles for Clefts was founded with that mission in mind. It’s not about the material things that are received in the package but our hope is that a much deeper meaning is felt. We hope that we can help be a source of comfort and support as you or someone you love undergoes a cleft related operation. We hope that we can come along side you and remind you there are others walking the same journey. There are others who care and you are never alone.
Exceptional Parent: www.eparent.com
Website and magazine about parenting a child or young adult with a disability or special health care need.
FACES – The National Craniofacial Association: www.faces-cranio.org
Organization assisting children and adults who have craniofacial disorders resulting from disease, accident, or birth.
FloridaHATS: https://www.floridahats.org/about-us/

Friendly Faces: www.friendlyfaces.org
A network of resources for individuals with facial differences, their parents, families, and friends.
Kidpower, Teenpower,Fullpower International: www.kidpower.org
Organization helping people of all ages to stay safe, act wisely and believe in themselves.
March of Dimes: www.marchofdimes.com
Organization dedicated to “improving the health of babies by preventing birth defects and infant mortality” through research, community services, education, and advocacy. It also provides individual genetic information to callers.
Stop Bullying: www.stopbullying.gov
Government supported program helping to understand how to discuss bullying and bullying prevention in a way that would make sense to young people, recommending ways for adults to take a stand against bullying. Website includes personal stories of people on how bullying has affected their lives and the lives of their friends and family members.