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AboutFace USA Presentation to the Clark County School District, Special Education Low Incidence Department - March 27, 2006

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    1. 1. AboutFace USA cleftAdvocate Making a world of difference in a world of facial differences Clark County School District, Special Education Low Incidence Department March 27, 2006
    2. 2. 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>
    3. 3. 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>
    4. 4. 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>
    5. 5. 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>
    6. 6. 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>
    7. 7. <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>
    8. 8. <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>
    9. 9. 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>
    10. 10. <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>
    11. 11. <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>
    12. 12. 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>
    13. 13. 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>
    14. 14. <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>Nationally recognized </li></ul>Pathfinder Outreach Network
    15. 15. 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>
    16. 16. The Perceived Role of Educators <ul><li>Academics </li></ul><ul><li>Educational partnership with parents </li></ul>
    17. 17. <ul><li>Academics </li></ul><ul><li>Educational partnership with parents </li></ul><ul><li>Administrative duties </li></ul><ul><li>Expected to advance social and behavioral skills </li></ul><ul><li>Health educators </li></ul><ul><li>Mentors </li></ul><ul><li>Motivators </li></ul><ul><li>Role models </li></ul>The Real Role of Educators
    18. 18. The Real Role of Educators Teacher Social Worker Investigator
    19. 19. <ul><li>Teach children with a variety of special needs </li></ul><ul><li>Become consultants as more children stay in mainstream classrooms </li></ul><ul><li>Play a key role in the social development of students with special needs </li></ul><ul><li>Assist in the transition of students from EI services </li></ul><ul><li>Assist youth in transition </li></ul><ul><li>Provide a safe haven for learning </li></ul>The Role of Special Educators Teacher Social Worker Investigator
    20. 20. <ul><li>Educational needs </li></ul><ul><li>Psychosocial needs </li></ul><ul><li>Medical needs </li></ul>The Role of Investigator
    21. 21. <ul><li>Undiagnosed learning disability </li></ul><ul><ul><li>Dysnomia </li></ul></ul><ul><li>Self-concept </li></ul><ul><li>Peer pressure </li></ul><ul><li>Medical needs </li></ul><ul><ul><li>Undiagnosed and/or untreated medical conditions </li></ul></ul><ul><ul><li>Absences due to illness or surgery </li></ul></ul>Identify Roadblocks to Learning
    22. 22. <ul><li>Educational needs </li></ul>The Role of Investigator
    23. 23. <ul><li>Cleft/craniofacial teams are not screening for learning disabilities </li></ul><ul><li>American Cleft Palate/Craniofacial Association (ACPA) Team Standards Committee </li></ul><ul><li>Ronald P. Strauss, DMD, PhD, Chair (1998) </li></ul>ACPA Study Reveals...
    24. 24. <ul><li>Richman & Ryan </li></ul><ul><ul><li>Children with clefts had a 30% rate of reading disability </li></ul></ul><ul><ul><li>Mostly associated with dysnomia (rapid verbal recall and labeling) </li></ul></ul><ul><ul><li>Similar to short-term memory disorder </li></ul></ul><ul><ul><li>Also related to reading disability in children who were not born with clefts </li></ul></ul><ul><li>Do the Reading Disabilities of Children with Cleft Fit Into Current Models of Developmental Dyslexia? </li></ul><ul><li>Lynn C. Richman, PhD and Susan M. Ryan, MA (2003) </li></ul>The Learning Process
    25. 25. <ul><li>Richman, Ryan, Wilgenbusch & Millard </li></ul><ul><ul><li>Attention Deficit Hyperactivity Disorder (ADHD) is over-diagnosed in children with clefts </li></ul></ul><ul><ul><li>Really an undiagnosed memory deficit (dysnomia) mistaken for an attention deficit </li></ul></ul><ul><ul><li>Leads to some children with clefts not having their learning disability needs addressed and instead they are medicated. </li></ul></ul><ul><li>Overdiagnosis and Medication for Attention-Deficit Hyperactivity Disorder in Children with Cleft: Diagnostic Examination and Follow-Up </li></ul><ul><li>Lynn C. Richman, PhD, Susan M. Ryan, PhD, Tammy Wilgenbusch, PhD and Tom Millard, PhD (2004) </li></ul>The Learning Process
    26. 26. <ul><li>Richman, Wilgenbusch & Hall </li></ul><ul><ul><li>Visual short-term memory (i.e., remembering the names of objects or pictures), a sign of dysnomia, is related to reading ability in children with clefts </li></ul></ul><ul><ul><li>Findings suggest that a brief memory test using visual presentation and then verbal labeling may help identify children at high risk for reading disorders. </li></ul></ul><ul><ul><li>Study shows 65% accuracy in identifying reading disorders based on a brief memory test </li></ul></ul><ul><li>Spontaneous Verbal Labeling: Visual Memory and Reading Ability in Children with Cleft </li></ul><ul><li>Lynn C. Richman, PhD, Tammy Wilgenbusch, PhD and Thomasin Hall (2005) </li></ul>The Learning Process
    27. 27. <ul><li>Lack of identification of learning disabilities may lead to emotional or behavioral problems due to school difficulties </li></ul><ul><li>Can exacerbate many of the psychosocial difficulties some children with clefts experience </li></ul>The Learning Process
    28. 28. <ul><li>Become familiar with speech milestones in children born with clefts and other craniofacial conditions </li></ul><ul><li>Understand what is physically possible </li></ul><ul><ul><ul><li>Velopharyngeal Insufficiency </li></ul></ul></ul><ul><ul><ul><li>Class 3 Malocclusion </li></ul></ul></ul><ul><li>Referrals to qualified professionals </li></ul>Speech/Language
    29. 29. <ul><li>The mystery of the IEP </li></ul><ul><ul><li>Many parents don’t understand rights and responsibilities under IDEA </li></ul></ul><ul><ul><li>Some parents report IEP goals not being met and children being advanced without making any or substantial progress </li></ul></ul><ul><ul><li>Encourage the use of a qualified advocate </li></ul></ul><ul><li>Speech vs. Language </li></ul><ul><ul><li>Many parents don’t understand the difference between the mechanics of speech and language development </li></ul></ul>Involving the Family
    30. 30. <ul><li>Educational needs </li></ul><ul><li>Psychosocial needs </li></ul>The Role of Investigator
    31. 31. <ul><li>Large percentage of teams without a psychologist </li></ul><ul><li>American Cleft Palate/Craniofacial Association (ACPA) Team Standards Committee </li></ul><ul><li>Ronald P. Strauss, DMD, PhD, Chair (1998) </li></ul>ACPA Study Reveals...
    32. 32. <ul><li>Birth anomalies vs. </li></ul><ul><li>acquired facial differences </li></ul><ul><li>Self-perception </li></ul><ul><li>Social perception by peers, parents and teachers </li></ul>Social Adjustment
    33. 33. <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>The 25 cent answer vs. the $5 answer </li></ul><ul><li>Students need to feel protected, but not pitied </li></ul>Tolerance vs. Acceptance
    34. 34. <ul><li>For social and family perceptions of congenital facial conditions to change, three initial steps need to occur </li></ul><ul><ul><li>The first step involves creating optimism and positivity around the time of birth and diagnosis. </li></ul></ul><ul><ul><li>The second step is for clinicians to start asking children and parents new and different questions. </li></ul></ul><ul><ul><li>The third step is to launch a new craniofacial social science model for research built around understanding resilience and the development of healthy people. </li></ul></ul><ul><li>Cleft Palate Foundation, Connections Conference, Keynote address </li></ul><ul><li>Ronald P. Strauss, DMD, PhD, Chair (2002) </li></ul>Strauss teaches...
    35. 35. <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...
    36. 36. <ul><li>Large percentage of teams without a social worker </li></ul><ul><li>American Cleft Palate/Craniofacial Association (ACPA) Team Standards Committee </li></ul><ul><li>Ronald P. Strauss, DMD, PhD, Chair (1998) </li></ul>ACPA Study Reveals...
    37. 37. <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>Other Challenges
    38. 38. <ul><li>Persons with facial differences, not... </li></ul><ul><ul><li>Cleft-affected, cleft lip/palate child </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> </li></ul>Person-first Language
    39. 39. <ul><li>Recognizing bullying and teasing </li></ul><ul><li>Making sure students know how and when to report incidents </li></ul><ul><li>Discussing differences </li></ul><ul><li>Programs </li></ul><ul><ul><li>Don’t Laugh at Me – Operation Respect </li></ul></ul><ul><ul><li>Unwrapping the Package </li></ul></ul><ul><ul><ul><li>(AF International) </li></ul></ul></ul>Bullying and Teasing
    40. 40. <ul><li>Full life expectancy </li></ul><ul><li>Increase expectations! </li></ul><ul><ul><li>Setting goals </li></ul></ul><ul><ul><ul><li>College or the workforce </li></ul></ul></ul><ul><ul><li>Life skills </li></ul></ul><ul><ul><li>Medical care </li></ul></ul><ul><ul><ul><li>Youth are more interested in financial and social independence than medical issues </li></ul></ul></ul>Youth in Transition
    41. 41. <ul><li>The areas of noncompliance were striking and suggest the need for specific efforts to assure the availability of psychological and social services to team patients. </li></ul><ul><li>American Cleft Palate/Craniofacial Association (ACPA) Team Standards Committee </li></ul><ul><li>Ronald P. Strauss, DMD, PhD, Chair (1998) </li></ul>ACPA Study Reveals...
    42. 42. <ul><li>Understanding the effects on children </li></ul><ul><ul><li>Kids are smart! </li></ul></ul><ul><ul><ul><li>Financial burdens, time burdens, etc. </li></ul></ul></ul><ul><ul><li>Communicating feelings and needs </li></ul></ul><ul><li>Making appropriate referrals </li></ul>Involving the Family
    43. 43. <ul><li>Educational needs </li></ul><ul><li>Psychosocial needs </li></ul><ul><li>Medical needs </li></ul>The Role of Investigator
    44. 44. <ul><li>Cleft team visits should include regular audiology and ENT screenings </li></ul><ul><li>Craniofacial team visits should include regular audiology, ENT and ophthalmology screenings </li></ul><ul><li>American Cleft Palate/Craniofacial Association (ACPA) Team Standards Committee </li></ul><ul><li>Ronald P. Strauss, DMD, PhD, Chair (1998) </li></ul>ACPA Study Reveals...
    45. 45. <ul><li>Various medical needs </li></ul><ul><ul><li>Pain, illness and fatigue are linked to reduced participation in school and social activity </li></ul></ul><ul><li>Teachers and School Nurses </li></ul><ul><ul><li>Limited time and resources </li></ul></ul>Diagnostic Screening
    46. 46. <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
    47. 47. <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...
    48. 48. <ul><li>AboutFace USA </li></ul><ul><ul><li> </li></ul></ul><ul><li>cleftAdvocate </li></ul><ul><ul><li> </li></ul></ul><ul><li>Apert International </li></ul><ul><ul><li> </li></ul></ul><ul><li>Goldenhar/HFM Network </li></ul><ul><ul><li> </li></ul></ul><ul><li>Crouzon Support Network </li></ul><ul><ul><li> </li></ul></ul><ul><li>Velocardiofacial/22q Support </li></ul><ul><ul><li> </li></ul></ul><ul><li>National Foundation for Ectodermal Dysplasia </li></ul><ul><ul><li> </li></ul></ul><ul><li>The Phoenix Society </li></ul><ul><ul><li> </li></ul></ul><ul><li>National Institute for Dental and Craniofacial Research </li></ul><ul><ul><li> </li></ul></ul>Resources
    49. 49. AboutFace USA cleftAdvocate Making a world of difference in a world of facial differences Clark County School District, Special Education Low Incidence Department March 27, 2006