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AboutFace USA cleftAdvocate Making a world of difference in a world of facial differences University of Nevada, Las Vegas School of Dental Medicine July 18, 2006

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Who we are... <ul><li>AboutFace USA is a national organization providing information and support for persons with facial differences and their families. </li></ul><ul><li>AboutFace USA supports persons whose facial differences are present at birth and those whose facial differences were acquired as a result of illness, disease or trauma. </li></ul><ul><li>AboutFace USA provides access to a broad range of written and audio-visual resources about various craniofacial conditions. Community-based resources can also be provided to help families adapt to the effects and challenges of living with a craniofacial condition/facial difference. Information on school programs is also available. </li></ul><ul><li>AboutFace USA provides individuals and families an opportunity to connect with others facing similar challenges. </li></ul>

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Who we serve... <ul><li>Individuals </li></ul><ul><li>Families and Friends </li></ul><ul><li>Medical professionals </li></ul><ul><li>Education professionals </li></ul><ul><li>Community </li></ul>

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What we do... <ul><li>Pathfinder Outreach Network </li></ul><ul><li>Family-to-Family Connection </li></ul><ul><li>Websites </li></ul><ul><li>Newsletter </li></ul><ul><li>The North American Craniofacial Family Conference (NACFC) </li></ul><ul><li>We run on volunteer power! </li></ul>

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Our goals... <ul><li>Support families </li></ul><ul><ul><li>Emotional support </li></ul></ul><ul><ul><li>Educational materials </li></ul></ul><ul><ul><li>Local/regional resources </li></ul></ul><ul><li>Bridge the gap between families and service providers </li></ul><ul><li>Strengthen outreach efforts </li></ul><ul><li>Increase public awareness </li></ul>

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Types of Facial Differences <ul><li>Congenital anomalies </li></ul><ul><ul><li>Cleft lip and palate </li></ul></ul><ul><ul><li>Hemifacial Microsomia </li></ul></ul><ul><ul><li>Apert Syndrome </li></ul></ul><ul><ul><li>Crouzon Syndrome </li></ul></ul><ul><ul><li>Other craniofacial conditions </li></ul></ul><ul><li>Acquired facial differences </li></ul><ul><ul><li>Burns </li></ul></ul><ul><ul><li>Trauma </li></ul></ul><ul><ul><li>Illness and disease </li></ul></ul>

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<ul><li>Varying degrees of hearing loss </li></ul><ul><li>Speech issues </li></ul><ul><li>300+ known syndromes </li></ul>Cleft Lip and/or Palate <ul><li>Unilateral or bilateral </li></ul><ul><li>Feeding issues </li></ul><ul><li>Multiple reconstructive surgeries </li></ul>

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<ul><li>The variant Goldenhar Syndrome also involves anomalies of the eyes and spine </li></ul>Hemifacial Microsomia <ul><li>One-half of the face does not develop, and the other half may be underdeveloped </li></ul><ul><li>Multiple anomalies can include cardiovascular and respiratory issues </li></ul>

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Apert Syndrome <ul><li>Affects the skull, eyes and face </li></ul><ul><li>Boney fusion of the hands and feet (syndactyly) </li></ul><ul><li>Occasional hearing loss </li></ul><ul><li>A small percentage of patients may have cardiovascular, gastrointestinal and respiratory issues </li></ul><ul><li>Occurs approximately 1 in 65,000 births and is not hereditary </li></ul>

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<ul><li>Unlike Apert Syndrome, does not usually involve non-craniofacial anomalies </li></ul>Crouzon Syndrome <ul><li>Multiple anomalies include premature fusion of cranial sutures and protruding eyes </li></ul><ul><li>Crouzon Syndrome is hereditary </li></ul><ul><li>Mid-face hypoplasia and large mandible corrected by distraction </li></ul>

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<ul><li>Anopthalmus with Frontonasal Dysplasia </li></ul>Other Craniofacial Conditions <ul><li>Velocardiofacial Syndrome (VCFS) </li></ul><ul><ul><li>22q.11 deletion, often discovered after an attempt at palate closure </li></ul></ul><ul><ul><li>Many patients have psychiatric issues </li></ul></ul><ul><ul><li>Low-frequency anomalies can include spina bifida, juvenile rheumatoid arthritis and growth hormone deficiency (less than 5%) </li></ul></ul><ul><ul><li>Anopthalmus - eye is underdeveloped or altogether missing; hypertelorism </li></ul></ul><ul><ul><li>Frontonasal Dysplasia - Rare median facial cleft; missing nasal bones </li></ul></ul>

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Other Craniofacial Conditions <ul><li>Ectodermal Dysplasia </li></ul><ul><ul><li>Affects the hair, skin, teeth, nails and sweat glands </li></ul></ul><ul><ul><li>Related anomalies include cleft lip/palate and syndactyly of the hands and feet. </li></ul></ul><ul><li>Microtia/Atresia </li></ul><ul><li>Hemangiomas/Port Wine Stains </li></ul><ul><li>Hemi-hypertrophy Gigantism </li></ul><ul><li>Congenital Tumors </li></ul><ul><li>Freeman-Sheldon Syndrome </li></ul><ul><li>Unspecified Craniofacial Syndromes </li></ul>

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Acquired Facial Differences <ul><li>Burns </li></ul><ul><ul><li>Fire and chemical </li></ul></ul><ul><li>Illness and Disease </li></ul><ul><ul><li>Oral, Head and Neck Cancers </li></ul></ul><ul><ul><li>Scleroderma, Vitiligo, Benign Tumors </li></ul></ul><ul><ul><li>Facial Palsy </li></ul></ul><ul><li>Trauma </li></ul><ul><ul><li>Traffic accidents </li></ul></ul><ul><ul><li>Animal attacks </li></ul></ul><ul><ul><li>Industrial accidents </li></ul></ul><ul><ul><li>Combat </li></ul></ul>

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<ul><li>A system of networking families to provide support, information, referrals and social opportunities </li></ul><ul><li>Not medical professionals </li></ul><ul><ul><li>Peer counselors </li></ul></ul><ul><ul><li>Advocates </li></ul></ul><ul><ul><li>Confidantes </li></ul></ul><ul><li>Recognized nationally </li></ul>Pathfinder Outreach Network

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Types of Outreach <ul><li>One-to-one support </li></ul><ul><li>Informal support organizations </li></ul><ul><li>Formal support organizations </li></ul><ul><li>Educational outreach </li></ul><ul><li>We do not establish traditional support groups...we are a support network ! </li></ul>

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<ul><li>Brushing and flossing </li></ul><ul><li>Good nutrition </li></ul><ul><li>Regular check-ups </li></ul><ul><li>Innovative treatments </li></ul><ul><ul><li>General dentistry and specialties </li></ul></ul><ul><li>Media emphasis on appearance </li></ul>The Path to Good Oral Health

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<ul><li>&quot;Oral health is essential to the general health of all Americans and can be achieved. However, all Americans are not able to take that to heart.&quot; </li></ul><ul><li>NIDCR director Dr. Lawrence Tabak, </li></ul><ul><li>C iting 2000 Surgeon General’s Report </li></ul>Healthcare Disparities...

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<ul><li>Oral hygiene </li></ul><ul><li>General fear of dental procedures </li></ul><ul><li>Lack of insurance or other coverage </li></ul>Common Roadblocks

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<ul><li>Patients with craniofacial anomalies </li></ul><ul><ul><li>Some patients fear all or most medical professionals and facilities </li></ul></ul><ul><ul><ul><li>Treating the senses </li></ul></ul></ul><ul><ul><li>Lack of access to basic services </li></ul></ul><ul><ul><ul><li>Medical financing – CYSHCN, CHIP </li></ul></ul></ul><ul><ul><ul><li>Geography </li></ul></ul></ul><ul><ul><li>Few professionals specializing in special needs dentistry </li></ul></ul>Additional Roadblocks

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<ul><li>Patient- and family-centered care is an innovative approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care patients, families, and providers. Patient- and family-centered care applies to patients of all ages, and it may be practiced in any health care setting. </li></ul><ul><li>The Institute for Family-Centered Care </li></ul>Family-Centered Care

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<ul><li>Respecting each patient and his or her family </li></ul><ul><li>Sharing complete and unbiased information with the patient and family in a timely manner </li></ul><ul><li>Supporting and facilitating choice for the patient and family about approaches to care and support </li></ul><ul><li>Recognizing that patient and family knowledge, values, beliefs and cultural backgrounds affect the planning and delivery of care </li></ul><ul><li>Recognizing and building on the strengths of each patient and family, even in difficult and challenging situations </li></ul><ul><li>Ensuring flexibility in organizational policies, procedures, and provider practices so services can be tailored to the needs, beliefs, and cultural values of each patient and family </li></ul>In Real-Life Terms

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<ul><li>When treating patients with craniofacial conditions... </li></ul><ul><ul><li>Understand your patient’s condition </li></ul></ul><ul><ul><li>Address your patient directly </li></ul></ul><ul><ul><li>Educate your patient about all procedures and the overall treatment plan made in conjunction with their team </li></ul></ul><ul><ul><li>Educate your staff </li></ul></ul>Patient-Centered Care

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<ul><li>Persons with facial differences, not... </li></ul><ul><ul><li>Cleft-affected, cleft lip/palate child, craniofacial person </li></ul></ul><ul><ul><li>Deformed </li></ul></ul><ul><ul><li>Harelip </li></ul></ul><ul><li>Congenital or birth anomalies or differences, not... </li></ul><ul><ul><li>Birth defects </li></ul></ul><ul><li>Survivors, not... </li></ul><ul><ul><li>Victims </li></ul></ul><ul><li>Avoid the phrase “suffering from”! </li></ul><ul><li>Advocacy page, cleftAdvocate website </li></ul><ul><li>www.cleftadvocate.org/advocacy.html </li></ul>Person-first Language

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<ul><li>Make appropriate referrals </li></ul><ul><li>Interface with cleft/craniofacial team </li></ul><ul><ul><li>HIPAA </li></ul></ul><ul><li>Follow-up with family </li></ul>Involving the Family

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<ul><li>Resiliency </li></ul><ul><ul><li>Individual </li></ul></ul><ul><ul><li>Family </li></ul></ul><ul><li>Embracing differences </li></ul><ul><ul><li>When is enough surgery or treatment enough? </li></ul></ul><ul><li>Blessings in disguise </li></ul>Focus on...

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Working Together Family Neighborhood Partners in Care (NPiC) Craniofacial Team

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<ul><li>Neighborhood Partners in Care (NPiCs) </li></ul><ul><ul><li>Provide front-line care </li></ul></ul><ul><ul><li>Interface directly with the craniofacial team </li></ul></ul><ul><ul><li>Follow the care plan laid out by the team </li></ul></ul>Neighborhood Partners in Care

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<ul><li>Financial issues and systems </li></ul><ul><ul><li>Day-to-day living </li></ul></ul><ul><ul><li>CHSCH and other programs </li></ul></ul><ul><li>Employment </li></ul><ul><ul><li>FMLA </li></ul></ul><ul><ul><li>Insurance </li></ul></ul><ul><li>Community </li></ul><ul><ul><li>Transportation </li></ul></ul><ul><ul><li>Respite </li></ul></ul><ul><li>Youth in Transition </li></ul><ul><ul><li>More interested in financial and social independence than medical issues </li></ul></ul>Other Challenges

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<ul><li>Tolerance? </li></ul><ul><ul><li>The capacity for or the practice of recognizing and respecting the beliefs or practices of others </li></ul></ul><ul><li>Acceptance </li></ul><ul><ul><li>React favorably to; consider right and proper </li></ul></ul><ul><ul><li>Admit into a group or community </li></ul></ul><ul><li>Patients need to feel respected and protected, but not pitied </li></ul>Tolerance vs. Acceptance

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<ul><li>Pediatric dentistry </li></ul><ul><li>Orthodontics </li></ul><ul><li>Prosthodontics </li></ul><ul><li>Restorative dentistry </li></ul><ul><li>Maxillofacial Surgery </li></ul>Specialties

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<ul><li>Access to the ACPA Journal </li></ul><ul><li>Discounted student memberships </li></ul><ul><li>Free registration to annual conference (Colorado in 2007) </li></ul>Become an ACPA Member!

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<ul><li>We provide... </li></ul><ul><ul><li>Educational resources for families and professionals </li></ul></ul><ul><ul><li>A roadmap to medical and social services </li></ul></ul><ul><ul><li>Referrals to outreach volunteers and other support organizations </li></ul></ul><ul><ul><li>Strict confidentially </li></ul></ul><ul><li>Make the referral! </li></ul>How we can help...

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<ul><li>American Cleft Palate-Craniofacial Association (ACPA) Parameters of Care </li></ul><ul><ul><li>http://www.acpa-cpf.org/teamcare/parameters.htm </li></ul></ul><ul><li>American Cleft Palate-Craniofacial Association (ACPA) Student Training </li></ul><ul><ul><li>http://www.acpa-cpf.org/train/ </li></ul></ul><ul><li>American Dental Association - Special Needs Dentistry Information </li></ul><ul><ul><li>http://www.ada.org/public/topics/special_needs.asp </li></ul></ul><ul><li>Internal Maxillary Distraction </li></ul><ul><ul><li>http://www.klsmartinusa.com/MOD-line/zurich_max.htm </li></ul></ul><ul><li>Bone Morphogenic Protein </li></ul><ul><ul><li>http://iadr.confex.com/iadr/2004Hawaii/techprogram/abstract_45918.htm </li></ul></ul>Resources

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<ul><li>AboutFace USA </li></ul><ul><ul><li>www.aboutfaceusa.org </li></ul></ul><ul><li>cleftAdvocate </li></ul><ul><ul><li>www.cleftadvocate.org </li></ul></ul><ul><li>Apert International </li></ul><ul><ul><li>www.apert.org </li></ul></ul><ul><li>Goldenhar/HFM Network </li></ul><ul><ul><li>www.goldenharsyndrome.org </li></ul></ul><ul><li>Crouzon Support Network </li></ul><ul><ul><li>www.crouzonsupport.org </li></ul></ul><ul><li>Velocardiofacial/22q Support </li></ul><ul><ul><li>http://www.vcfsef.org </li></ul></ul><ul><li>National Foundation for Ectodermal Dysplasia </li></ul><ul><ul><li>http://www.nfed.org </li></ul></ul><ul><li>The Phoenix Society </li></ul><ul><ul><li>www.phoenix-society.org </li></ul></ul><ul><li>National Institute for Dental and Craniofacial Research </li></ul><ul><ul><li>www.nidcr.nih.gov </li></ul></ul>Resources

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Join us at the NACFC! <ul><li>2006 North American Craniofacial Family Conference (NACFC) </li></ul><ul><li>Monday, July 24 </li></ul><ul><ul><li>Keynote Speaker Thomas Hart, DDS, PhD </li></ul></ul><ul><ul><li>Facial Imaging as a Diagnostic Tool </li></ul></ul><ul><li>Continental Breakfast and Keynote - $25 for students </li></ul>

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AboutFace USA cleftAdvocate Making a world of difference in a world of facial differences University of Nevada, Las Vegas School of Dental Medicine July 18, 2006