Pathfinder Program
Participation Agreement

I agree to conduct my Pathfinder Program outreach activities in accordance with AboutFace USA/cleftAdvocate’s Pathfinder Program outline, its Mission and the Code of Ethics.

Please provide the following information:

Name:  _______________________________________________________

Address:  _____________________________________________________

City, State, Zip _________________________________________________

Phone:  _______________________________________________________

E-mail:  _______________________________________________________

Check all that apply:

_____	I agree to be listed in the national network database as a Pathfinder
contact.

_____	I agree to have the following information published on the cleftAdvocate
website (check all that apply):

_____  Name	_____ City and State	_____ Phone	_____ E-mail

_____	I would prefer not to publish my information on the website, but may be
contacted to assist families as needed.

_____	I am a:

	_____ Person with a facial difference.

	_____ Parent or caregiver of a child with a facial difference.

	Condition:  ________________________________________________

By participating in AboutFace USA/cleftAdvocate’s Pathfinder Program, I acknowledge that my actions are fully independent of the organization and that as a Pathfinder, I am not an employee, officer or director of the non-profit corporation, and will not represent myself as such.

Signature  ___________________________________  Date:  ______________

Pathfinder Program
Recommended Resources/Materials:

AboutFace USA
www.aboutfaceusa.org
Newsletter, family networking, publications

cleftAdvocate’s Family-To-Family Connection
www.cleftadvocate.org/ftfc.html

Cleft Palate Foundation
www.cleftline.org
24-hour hotline, publications, ACPA team database

Don’t Laugh At Me – Operation Respect
www.dontlaugh.org
Free school/camp program and materials

Let’s Face It
www.faceit.org
Family networking, free Resource Guide

Understanding Cleft Lip & Palate - Video
A Guide for New Parents
(Available in English and Spanish)
Foundation for Faces of Children
www.facesofchildren.org

This is by no means a complete list of available resources!

Your Pathfinder packet can include these, as well as information about our Pathfinder Partner Organizations, local support organizations, early intervention services, etc.  The key is to provide families with a starting point for further education and services.  Avoid providing too much information; it is easy to overwhelm families with TMI!!

Pathfinder Program
What is a Pathfinder?

path·find·er , n.

1.	One that discovers a new course or way, especially through or into unexplored regions. 

2.	One of a group of paratroopers who land ahead of a main force in order to mark the drop zone. 

The Pathfinder program was developed to provide a first point of contact for new parents and patients.

What is a “new” parent or patient?

“New” can mean many different things…
 
•	Parents of a newborn, or a couple who has discovered their child’s anomaly through routine ultrasound.

•	Adoptive parents of a toddler who has had little or no medical treatment, or a prospective adoptive family.

•	A teen or adult with an acquired facial difference due to injury or illness.

•	A parent whose child has not had treatment lately, but needs to learn about an upcoming surgery, such as bone grafting or orthognathic surgery.

•	An adult who has never sought support services before.

Pathfinder Program
Newborn Outreach Outline

If you are interested in Newborn Outreach, here is a proven outline for working with your cleft/craniofacial team.

1.	Contact your team coordinator or other trusted medical professional (advisor).

2.	Discuss the Pathfinder Program, and include an outline of what you’d like to accomplish.  Be sure to point out that the Pathfinder Program is NOT a typical support group; we are a NETWORK of families providing a variety of support services to those who need it.

3.	Work with your advisor to establish geographic areas if you are in a large metropolitan area.  Consider which communities your team serves.

4.	Ask for the names of other families and individuals who might be interested in working with you.

5.	Ask your advisor if the team has a social worker stationed in each area hospital; working with someone familiar with the hospital structure is the key to your success.

6.	Ask your advisor if they prefer hospitals contact you, the Pathfinder Coordinator, directly or if the hospital should contact the advisor first when a child with a cleft or craniofacial anomaly is born.

7.	Ask your advisor if they have feeding devices available, or if the area hospitals have them available on-site.  Also, learn the names of the team’s feeding specialists for future contact.

In the beginning it may seem you are an island of enthusiasm with no families in your network!  But that’s okay....remember, the Pathfinder Program is unique in that there is not a support “group” mentality.  Networks are built one family at a time.  Without the pressure of structured monthly support group meetings, a network flourishes by means of one-to-one contact.  That might mean calling the parents of a newborn, or talking to a family you meet while waiting to see your team.  It may also mean a chance meeting on a playground or contact through a friend of a friend.

Newborn outreach programs can be time-consuming to establish, but the rewards are great!

Pathfinder Program
Responsibilities

Pathfinder Contacts
Establish and maintain team, hospital,
family and/or other support contacts.

Pathfinder Packets
Provide pertinent information to families
and medical professionals.

Team Appointments
Stress the importance of scheduling
an initial team consultation.

Feeding Issues
Make certain a referral for feeding and
nutrition counseling is made, if applicable.

Buddy Match 
Provide a support network "buddy" contact,
or become the "buddy" contact.

Pathfinder Program
Sample Hospital Flyer

When a newborn presents with
a cleft lip and/or palate
or other craniofacial anomaly,
immediately contact:

Local Cleft/Craniofacial Team(s)
(Add information here)

Lactation Consultant
(In-hospital staff and/or a feeding specialist
from the cleft/craniofacial team)

Provide parents with the following information:

Cleft Palate Foundation
www.cleftline.org
24-hour hotline:  1-800-24CLEFT

AboutFace USA
www.aboutfaceusa.org

cleftAdvocate
www.cleftadvocate.org

Local cleftAdvocate Pathfinder
(Add your contact information here)

This is a simple and direct list of resources addressing the most immediate needs of the family.  Once initial contact is made, you can provide further information in your Pathfinder packet.

Pathfinder Program
Sample Packet

A Warm Welcome
Prepare a generic welcome letter and/or a congratulatory welcome letter (for new births and adoptions).
 
Your Pathfinder Contact Information
Include your business card.

cleftAdvocate Brochure
Downloadable from our website at www.cleftadvocate.org.

Cleft Palate Foundation 1-800-24CLEFT
Include one or two fact sheets (downloadable from the CPF website), for instance:

For Parents of Newborn Babies with Cleft Lip/Palate
Choosing a Cleft Palate or Craniofacial Team

This information is also available free to families by calling the Cleftline or visiting the CPF website.  (Quantities available to outreach networks for a nominal fee.)

Area Cleft/Craniofacial Teams
A list of teams is available on the CPF website.

Local Resources
Include local support organizations and early intervention services.

The most important thing to remember:

DO NOT overwhelm new parents.  A Pathfinder’s duty is to provide direction.  The family will seek out more information as time progresses, and each will do so in their own time, at their own comfort level.

Pathfinder Program
Important cleftAdvocate Webpages

Cleft Q&A
http://www.cleftadvocate.org/cleftqa.html

State/Local Teams and Resources
http://www.cleftadvocate.org/cleftteams.html

cleftAdvocate’s Family-To-Family Connection
http://www.cleftadvocate.org/ftfc.html

Cleft Palate Nursers and Other Feeding Alternatives
http://www.cleftadvocate.org/feeders.html

Sippy Cups
http://www.cleftadvocate.org/sippycups.html

Insurance
http://www.cleftadvocate.org/insurance.html

Advocacy
http://www.cleftadvocate.org/advocacy.html

Photo Gallery
http://www.cleftadvocate.org/gallery.html

Of course, there is much more to the cleftAdvocate website; however, these are the most popular pages viewed by first-time visitors.

Pathfinder Program
Mission Statement

The cleftAdvocate Mission Statement

The Mission of the cleftAdvocate is to educate,
inspire and empower families whose lives are touched
by cleft lip and palate or other craniofacial anomalies.

By providing educational opportunities,
on- and off-line support networks,
social interaction and advocacy guidelines,
cleftAdvocate gives families the tools they need
to obtain the absolute best medical care
from their craniofacial team and
the best service from their insurer,
while encouraging children, teens and adults
with cleft lip and/or palate to reach
their highest level of self-esteem.

cleftAdvocate promotes
understanding and respect
within a *person first* protocol.

Pathfinder Program
Code of Ethics

AboutFace USA/cleftAdvocate Code of Ethics

AboutFace USA, cleftAdvocate, its Officers, Directors, Employees and Volunteers
shall adhere to the following Code of Ethics:

Our Mission and Programs

We will ensure that programs diligently, effectively and efficiently work toward achieving our mission.

We will appropriately evaluate programs and projects on an ongoing basis to ensure efficiency and effectiveness.

We will establish and carry out our programs and services with the utmost professionalism and respect for every person served.

We will aspire to make our programs and services available to everyone who can benefit.

Our Integrity

We will act with consistency, openness, and honesty in all that we do.

We will act in such a way as to engender the public's trust.

We will act in the best interest of the organization rather than ourselves and/or other individuals.

We will avoid and prevent any actual, potential or perceived conflicts of interest.

We will insure that all services, recognition and other transactions promised,
in consideration of a gift or transaction, will be fulfilled in a timely manner.

Financial and Legal

We will be faithful stewards of the resources entrusted to us.

We will keep fundraising and administrative expenses at the lowest possible percentage of receipts,
and will spend the maximum amount of available resources for the purposes for which they were given.

We will provide sound and timely financial management in compliance with all legal and regulatory requirements.

Fundraising

We will ensure that our fundraising practices are consistent with our mission.

We will ensure our fundraising programs reflect a foundation of truthfulness and responsible stewardship.

We will seek to inspire trust in every transaction.

We will honor the intentions of our donors and the confidential nature of the relationship.

Public Policy

We will clearly and specifically display and describe the organization's identity on the organization's website.

We will provide the public with relevant information about our mission,
program activities and finances, while maintaining appropriate confidentiality.

We will protect the interests and privacy of individuals interacting with our website and our on-line support network.

We will refrain from partisan political activity when acting on behalf of the organization.