The document summarizes a workshop about becoming a Pathfinder to help families affected by cleft lip/palate or craniofacial conditions. Pathfinders provide support, information, referrals, and social opportunities to bridge gaps families face. They stress importance of team care and address immediate feeding issues. Pathfinders can offer one-on-one family support, help formal support organizations, facilitate informal networks, and provide education to professionals. The workshop discussed types of outreach, responsibilities, resources, and overcoming roadblocks to helping families.

1. 2006 North American Craniofacial Family Conference Alexis Park Resort July 23, 2006 Pathfinder Outreach Workshop

2. Close your eyes….

3. Why are we here? Share our experiences Drive to help others Desire to educate Personal fulfillment Seeking healing

4. What we hear most... They left the hospital without knowing how to feed their baby. They were not aware there was a cleft/craniofacial team or other specialists in their area. They didn’t know what to ask their physician or team on their initial consultation. They didn’t understand what their physician or team told them regarding treatment and surgery. No one directed them to community services they might utilize. No one told them where to go for peer support. They feel alone.

5. What is a Pathfinder? One that discovers a new course or way, especially through or into unexplored regions. One of a group of paratroopers who land ahead of a main force in order to mark the drop zone.

6. The Pathfinder Program A system of networking individuals and families to provide support, information, referrals and social opportunities.

7. Pathfinder Goals The Pathfinder goal is to bridge real and perceived gaps between families, medical professionals and service providers.

8. Pathfinder Responsibilities Establish and maintain physician, team, hospital, family and/or other support contacts. Provide pertinent information to families and professionals. Stress the importance of interdisciplinary team care, as well as patient- and family-centered care. Make certain feeding issues are addressed immediately. Provide a support network “buddy” contact.

9. Understanding your role… Peer counselor You are NOT a doctor! Advocate Provide a roadmap Confidante Provide an atmosphere of trust Our Code of Ethics

10. What you need… Skills Desire to help others Ability to really listen Ability to follow through Resources cleft Advocate website and FTFC AboutFace newsletter and networking database CPF publications and ACPA team database Pathfinder Partner Organizations Many others! Let’s name them...

11. Roadblocks to Outreach… Emotions Grief Fear Guilt Shame Blame Time Family Career Extra-curricular activities Volunteerism Procrastination What is the key to overcoming these roadblocks?

12. The Solution... Education Inspiration YOU! The Pathfinder Outreach Network

13. Getting started… Become a Pathfinder! Training and materials National database Pathfinder Partner Organizations Website, phone and e-mail availability Support of other Pathfinders Networking potential A wealth of knowledge!

14. Types of Outreach One-to-one family support Formal support organizations Informal support networks Educational opportunities for professionals

15. One-to-one Family Support The basis of all outreach! Most often occasional and informal “Call me if you need me…” Do not minimize the effectiveness of one-to-one support as this is how all networks begin!

16. Reaching Out… Gather resources Don’t reinvent the wheel! Contact your team Develop an outline suited to local needs Contacting potential Pathfinders HIPAA Consider geography Make in-hospital and other contacts Social workers, administrators, nurses Early Intervention services, ultrasound labs, pediatricians

17. Pathfinder Packets Warm welcome and/or congratulations Your Pathfinder contact information Feeding information* AF USA, cleft Advocate and other relevant handouts Pathfinder Partner Organizations Contact information, relevant websites ACPA Team information Local resources Buddy contact*

18. The Buddy System How to match a buddy What does the family need?? Consider the condition Consider the age of the patient Consider the comfort level of the family Utilize the Pathfinder Database!

19. Newborn Outreach The original Pathfinder Program! Hospitals and homes Telephone and e-mail Word-of-mouth Quickly expanded to outreach for all ages and for all facial differences

20. Beyond the Newborn... What is a “new” family? Expectant parents or parents of newborns Persons surviving trauma, disease, illness Upcoming treatment or surgery New to the area New to the team Adults and teens facing new challenges

21. Types of Outreach One-to-one family support Formal support organizations Informal support networks Educational opportunities for professionals

22. Informal Organizations Personal, e-mail and telephone contact Listservs Play dates Picnics, holiday parties One-to-one outreach rises to a new level when several families come together!

23. Formal Organizations Non-profit corporation Charter, by-laws, secretary of state filing, IRS filing Sometimes associated with a particular hospital or team Events Meetings, field trips, conferences Fundraising – 501(c)3 Grants and sponsorships Dinners, silent auctions, appeals to membership Administrative requirements Added responsibility of incorporating as a non-profit corporation sometimes takes the focus away from the original mission of the organization.

24. Professional Education Birthing hospitals and medical centers Pediatricians Dentists and Orthodontists Speech/Language Pathologists Ultrasound facilities Neighborhood Partners in Care (NPIC) Early Intervention Teams Medical, dental and nursing schools Public and private schools at all levels

25. When we come back… We will break into focus groups... What kind of Pathfinder are you, or what kind of Pathfinder do you want to be?

26. Focus Group Reports One-to-one family support Informal support networks Formal organizations Professional education

27. A final thought…

28. 2006 North American Craniofacial Family Conference Alexis Park Resort July 23, 2006 Pathfinder Outreach Workshop