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It's High Time You Realized...
You Are NOT Alone!
Through the Family-To-Family Connection and Featured Families, cleftAdvocate's mission to educate and empower families touched by clefts and other craniofacial anomalies continues.
Be sure to also visit our growing Photo Gallery!
Comments or questions? Contact us!
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Fighting For Your Child's Rights!
Becoming An Advocate...What Does It Mean?
You are a Vital Member of
Your Child's Cleft/Craniofacial Team!
The importance of team care cannot be underestimated. While there are many professionals consulting on your child's case, YOU are the most important part of the team!
First and foremost, be sure to keep all your child's appointments. This is important for many reasons, and critical to the timely repair of your child's cleft.
Make sure that you have a full understanding of all procedures and post-operative care. Keep a notebook handy to track team visits and other doctor appointments. Use your notebook to jot down questions as they arise. That way they'll be ready and at-hand during your visit.
If you don't understand a procedure or the timing of surgery, be sure to ask! Your team wants you to be totally comfortable with all their decisions regarding your child's care.
There may come a time when it will be up to you to ask the tough questions and you may even have to push for timely evaluation, treatment and surgery. As an adovocate for your child, follow-up is the key. Whether it is with your team or your child's primary care pediatrician or another professional or agency, keep asking until you get the anwers you want.
If you have not already consulted a team, call the Cleft Palate Foundation at1-800-24CLEFT for a referral. Free educational materials are also available from CPF.
Working with Your Insurance Company or HMO
to Maximize and Expedite Care
Without the necessary pre-approvals and timely payments from your group health organization (HMO) or insurance company, life can soon become a nightmare of delayed surgical dates, piles of paperwork and worse, yet, growing financial woes.
Fight the Good Fight!
If you're currently battling an HMO or insurance company, visit cleftAdvocate's Insurance section for tips on how to handle phone calls, how to compose letters that will get their attention, how to present your case at a grievance hearing, and much, much more.
Learn From Others and
Share Your Experiences!
Visit cleftAdvocate's Family-to-Family Connection and find guidance from other families who have faced these same challenges!
State and Federal Laws Pertaining to Cleft Lip/Palate Insurance Coverage
Only about a dozen states actually have laws on the books requiring insurance companies and HMOs to cover cleft lip and palate related services.
We need your help! Learn more about:
(Tips and FAQs from Advanced Consulting)
Related Pending Legislation
SAMPLE LETTERS!!
This is Your Chance to Educate Others
While You Educate Yourself!
Do you remember what it was like when your baby was born, or your adopted child came home, or you discovered through ultrasound that your child would have a cleft?
Become a Pathfinder!
The Pathfinder Outreach Network will help you establish and maintain an outreach/support network in your area! There are no hard, fast rules...just an outline easily tailored to your local needs and a springboard to get started.
Join us for Pathfinder Outrreach Network Overview and Training via webinar* - it's LIVE!
First Tuesday of Every Month!
1:00 PM Eastern
(12:00 Noon Central, 10:00 AM Pacific)
*Webinar technology allows you to view the presentation on your own computer, and listen in simultaneously, either by dialing in on your phone or through VoIP.
The Americans with Disabilities Act (ADA)
and Persons with Craniofacial Anomalies
Most people aren't aware that the ADA protects people with craniofacial anomalies from discrimination, including those with cleft lip and.or palate.
Your Child's Educational Rights
Under Federal Law
*This section currently under construction!
Some children with clefts will require speech therapy and other specialized services. Did you know that many of these services are available free or at low cost/sliding scale to families?
Visit cleftAdvocate's Early Intervention*
section to learn more about:
Early Intervention Services
Individual Family Service Plan
(IFSP)
Ages 0-2
Early Childhood Education
through the school system
Ages 3-5
School-based Mandated Services
Individualized Education Plan
(IEP)
Without a doubt, there's plenty involved in being your own or your child's Number One Advocate. No one knows you or your child better than YOU! That's why it is your job to be the leader of your team of professionals...at the clinic, at the hospital and at school.
At cleftAdvocate, we give you the tools you need to address health care concerns, insurance issues, education and special services, and much more!
States With Laws Regarding
Cleft Lip/Palate Coverage
Colorado (Read CRS 10-16-104)
Connecticut (Read Public Act 03-37)
Florida (Read Statute 627.64193)
Florida (Read FL Statute 641.428)
Florida (Read FL Statute 641.31094)
Indiana (Read IC 27-8-5.6-2)
Louisiana (Read RS §215.8)
Minnesota (Read Statute 62A.042)
Minnesota (Read Statute 62A.304)
North Carolina (Read Statute §58-51-30)
South Carolina (Read Title 38-71-240)
Texas (Read 1367.153)
Vermont (Read §4089g)
Virginia (Read Code §38.2-3411)
Wisconsin (Read Statute 632-895 Par. 5)
Informational purposes only. Always check with your state insurance commission to verify mandated benefits.
Social Services, Financial Assistance,
Travel/Lodging and More
Whether you're looking for a cleft/craniofacial team, a local support organization, early intervention programs, state insurance information, or even state social services, click over to our State pages from this map!
If you have a resource that should be included on your State page, please contact us!
On our Resources page you will find links to national and regional organizations that can help with expenses for travel and accommodations.
This cleftAdvocate page was last updated 3/25/2014
We subscribe to the HONcode principles of The Health On Net Foundation
Your Role in Advocacy
SIGN THE PETITION! The Reconstructive Surgery Act!
Help Pass Legislation!
cleftAdvocate
a program of ameriface
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Learn About Person First Terminology!
Remember that your child *has a cleft*, and is not *cleft-affected* or a *cleftie* or some other sort of nickname. The following links will outline Person First terminology, and will help you politely correct family, friends and strangers when an unacceptable or hurtful term is used.
Copyright © 2001-2010 by Kathie Snow
American Speech-Language-Hearing Association
Nebraska Department of Health & Human Services System
From the United Spinal Association website
From "Not Just For Wheelchairs" by 1-800-Wheelchair.com
