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

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


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    • 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. Who we are...
      • AboutFace USA is a national organization providing information and support for persons with facial differences and their families.
      • 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.
      • 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.
      • AboutFace USA provides individuals and families an opportunity to connect with others facing similar challenges.
    • 3. Who we serve...
      • Individuals
      • Families and Friends
      • Medical professionals
      • Education professionals
      • Community
    • 4. What we do...
      • Pathfinder Outreach Network
      • Family-to-Family Connection
      • Websites
      • Newsletter
      • The North American Craniofacial Family Conference (NACFC)
      • We run on volunteer power!
    • 5. Our goals...
      • Support families
        • Emotional support
        • Educational materials
        • Local/regional resources
      • Bridge the gap between families and service providers
      • Strengthen outreach efforts
      • Increase public awareness
    • 6. Types of Facial Differences
      • Congenital anomalies
        • Cleft lip and palate
        • Hemifacial Microsomia
        • Apert Syndrome
        • Crouzon Syndrome
        • Other craniofacial conditions
      • Acquired facial differences
        • Burns
        • Trauma
        • Illness and disease
    • 7.
      • Varying degrees of hearing loss
      • Speech issues
      • 300+ known syndromes
      Cleft lip and/or Palate
      • Unilateral or bilateral
      • Feeding issues
      • Multiple reconstructive surgeries
    • 8.
      • The variant Goldenhar Syndrome also involves anomalies of the eyes and spine
      Hemifacial Microsomia
      • One-half of the face does not develop, and the other half may be underdeveloped
      • Multiple anomalies can include cardiovascular and respiratory issues
    • 9. Apert Syndrome
      • Affects the skull, eyes and face
      • Boney fusion of the hands and feet (syndactyly)
      • Occasional hearing loss
      • A small percentage of patients may have cardiovascular, gastrointestinal and respiratory issues
      • Occurs approximately 1 in 65,000 births and is not hereditary
    • 10.
      • Unlike Apert Syndrome, does not usually involve non-craniofacial anomalies
      Crouzon Syndrome
      • Multiple anomalies include premature fusion of cranial sutures and protruding eyes
      • Crouzon Syndrome is hereditary
      • Mid-face hypoplasia and large mandible corrected by distraction
    • 11.
      • Anopthalmus with Frontonasal Dysplasia
      Other Craniofacial Conditions
      • Velocardiofacial Syndrome (VCFS)
        • 22q.11 deletion, often discovered after an attempt at palate closure
        • Many patients have psychiatric issues
        • Low-frequency anomalies can include spina bifida, juvenile rheumatoid arthritis and growth hormone deficiency (less than 5%)
        • Anopthalmus - eye is underdeveloped or altogether missing; hypertelorism
        • Frontonasal Dysplasia - Rare median facial cleft; missing nasal bones
    • 12. Other Craniofacial Conditions
      • Ectodermal Dysplasia
        • Affects the hair, skin, teeth, nails and sweat glands
        • Related anomalies include cleft lip/palate and syndactyly of the hands and feet.
      • Microtia/Atresia
      • Hemangiomas/Port Wine Stains
      • Hemi-hypertrophy Gigantism
      • Congenital Tumors
      • Freeman-Sheldon Syndrome
      • Unspecified Craniofacial Syndromes
    • 13. Acquired Facial Differences
      • Burns
        • Fire and chemical
      • Illness and Disease
        • Oral, Head and Neck Cancers
        • Scleroderma, Vitiligo, Benign Tumors
        • Facial Palsy
      • Trauma
        • Traffic accidents
        • Animal attacks
        • Industrial accidents
        • Combat
    • 14.
      • A system of networking families to provide support, information, referrals and social opportunities
      • Not medical professionals
        • Peer counselors
        • Advocates
        • Confidantes
      • Nationally recognized
      Pathfinder Outreach Network
    • 15. Types of Outreach
      • One-to-one support
      • Informal support organizations
      • Formal support organizations
      • Educational outreach
      • We do not establish traditional support groups...we are a support network !
    • 16. The Perceived Role of Educators
      • Academics
      • Educational partnership with parents
    • 17.
      • Academics
      • Educational partnership with parents
      • Administrative duties
      • Expected to advance social and behavioral skills
      • Health educators
      • Mentors
      • Motivators
      • Role models
      The Real Role of Educators
    • 18. The Real Role of Educators Teacher Social Worker Investigator
    • 19.
      • Teach children with a variety of special needs
      • Become consultants as more children stay in mainstream classrooms
      • Play a key role in the social development of students with special needs
      • Assist in the transition of students from EI services
      • Assist youth in transition
      • Provide a safe haven for learning
      The Role of Special Educators Teacher Social Worker Investigator
    • 20.
      • Educational needs
      • Psychosocial needs
      • Medical needs
      The Role of Investigator
    • 21.
      • Undiagnosed learning disability
        • Dysnomia
      • Self-concept
      • Peer pressure
      • Medical needs
        • Undiagnosed and/or untreated medical conditions
        • Absences due to illness or surgery
      Identify Roadblocks to Learning
    • 22.
      • Educational needs
      The Role of Investigator
    • 23.
      • Cleft/craniofacial teams are not screening for learning disabilities
      • American Cleft Palate/Craniofacial Association (ACPA) Team Standards Committee
      • Ronald P. Strauss, DMD, PhD, Chair (1998)
      ACPA Study Reveals...
    • 24.
      • Richman & Ryan
        • Children with clefts had a 30% rate of reading disability
        • Mostly associated with dysnomia (rapid verbal recall and labeling)
        • Similar to short-term memory disorder
        • Also related to reading disability in children who were not born with clefts
      • Do the Reading Disabilities of Children with Cleft Fit Into Current Models of Developmental Dyslexia?
      • Lynn C. Richman, PhD and Susan M. Ryan, MA (2003)
      The Learning Process
    • 25.
      • Richman, Ryan, Wilgenbusch & Millard
        • Attention Deficit Hyperactivity Disorder (ADHD) is over-diagnosed in children with clefts
        • Really an undiagnosed memory deficit (dysnomia) mistaken for an attention deficit
        • Leads to some children with clefts not having their learning disability needs addressed and instead they are medicated.
      • Overdiagnosis and Medication for Attention-Deficit Hyperactivity Disorder in Children with Cleft: Diagnostic Examination and Follow-Up
      • Lynn C. Richman, PhD, Susan M. Ryan, PhD, Tammy Wilgenbusch, PhD and Tom Millard, PhD (2004)
      The Learning Process
    • 26.
      • Richman, Wilgenbusch & Hall
        • 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
        • Findings suggest that a brief memory test using visual presentation and then verbal labeling may help identify children at high risk for reading disorders.
        • Study shows 65% accuracy in identifying reading disorders based on a brief memory test
      • Spontaneous Verbal Labeling: Visual Memory and Reading Ability in Children with Cleft
      • Lynn C. Richman, PhD, Tammy Wilgenbusch, PhD and Thomasin Hall (2005)
      The Learning Process
    • 27.
      • Lack of identification of learning disabilities may lead to emotional or behavioral problems due to school difficulties
      • Can exacerbate many of the psychosocial difficulties some children with clefts experience
      The Learning Process
    • 28.
      • Become familiar with speech milestones in children born with clefts and other craniofacial conditions
      • Understand what is physically possible
          • Velopharyngeal Insufficiency
          • Class 3 Malocclusion
      • Referrals to qualified professionals
      Speech/Language
    • 29.
      • The mystery of the IEP
        • Many parents don’t understand rights and responsibilities under IDEA
        • Some parents report IEP goals not being met and children being advanced without making any or substantial progress
        • Encourage the use of a qualified advocate
      • Speech vs. Language
        • Many parents don’t understand the difference between the mechanics of speech and language development
      Involving the Family
    • 30.
      • Educational needs
      • Psychosocial needs
      The Role of Investigator
    • 31.
      • Large percentage of teams without a psychologist
      • American Cleft Palate/Craniofacial Association (ACPA) Team Standards Committee
      • Ronald P. Strauss, DMD, PhD, Chair (1998)
      ACPA Study Reveals...
    • 32.
      • Birth anomalies vs.
      • acquired facial differences
      • Self-perception
      • Social perception by peers, parents and teachers
      Social Adjustment
    • 33.
      • Tolerance?
        • The capacity for or the practice of recognizing and respecting the beliefs or practices of others
      • Acceptance
        • React favorably to; consider right and proper
        • Admit into a group or community
      • The 25 cent answer vs. the $5 answer
      • Students need to feel protected, but not pitied
      Tolerance vs. Acceptance
    • 34.
      • For social and family perceptions of congenital facial conditions to change, three initial steps need to occur
        • The first step involves creating optimism and positivity around the time of birth and diagnosis.
        • The second step is for clinicians to start asking children and parents new and different questions.
        • The third step is to launch a new craniofacial social science model for research built around understanding resilience and the development of healthy people.
      • Cleft Palate Foundation, Connections Conference, Keynote address
      • Ronald P. Strauss, DMD, PhD, Chair (2002)
      Strauss teaches...
    • 35.
      • Resiliency
        • Individual
        • Family
      • Embracing differences
        • When is enough surgery or treatment enough?
      • Blessings in disguise
      Focus on...
    • 36.
      • Large percentage of teams without a social worker
      • American Cleft Palate/Craniofacial Association (ACPA) Team Standards Committee
      • Ronald P. Strauss, DMD, PhD, Chair (1998)
      ACPA Study Reveals...
    • 37.
      • Financial issues and systems
        • Day-to-day living
        • CHSCH and other programs
      • Employment
        • FMLA
        • Insurance
      • Community
        • Transportation
        • Respite
      Other Challenges
    • 38.
      • Persons with facial differences, not...
        • Cleft-affected, cleft lip/palate child
        • Deformed
        • Harelip
      • Congenital or birth anomalies or differences, not...
        • Birth defects
      • Survivors, not...
        • Victims
      • Avoid the phrase “suffering from”!
      • Advocacy page, cleftAdvocate website
      • www.cleftadvocate.org/advocacy.html
      Person-first Language
    • 39.
      • Recognizing bullying and teasing
      • Making sure students know how and when to report incidents
      • Discussing differences
      • Programs
        • Don’t Laugh at Me – Operation Respect
        • Unwrapping the Package
          • (AF International)
      Bullying and Teasing
    • 40.
      • Full life expectancy
      • Increase expectations!
        • Setting goals
          • College or the workforce
        • Life skills
        • Medical care
          • Youth are more interested in financial and social independence than medical issues
      Youth in Transition
    • 41.
      • 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.
      • American Cleft Palate/Craniofacial Association (ACPA) Team Standards Committee
      • Ronald P. Strauss, DMD, PhD, Chair (1998)
      ACPA Study Reveals...
    • 42.
      • Understanding the effects on children
        • Kids are smart!
          • Financial burdens, time burdens, etc.
        • Communicating feelings and needs
      • Making appropriate referrals
      Involving the Family
    • 43.
      • Educational needs
      • Psychosocial needs
      • Medical needs
      The Role of Investigator
    • 44.
      • Cleft team visits should include regular audiology and ENT screenings
      • Craniofacial team visits should include regular audiology, ENT and ophthalmology screenings
      • American Cleft Palate/Craniofacial Association (ACPA) Team Standards Committee
      • Ronald P. Strauss, DMD, PhD, Chair (1998)
      ACPA Study Reveals...
    • 45.
      • Various medical needs
        • Pain, illness and fatigue are linked to reduced participation in school and social activity
      • Teachers and School Nurses
        • Limited time and resources
      Diagnostic Screening
    • 46.
      • Make appropriate referrals
      • Interface with cleft/craniofacial team
        • HIPAA
      • Follow-up with family
      Involving the Family
    • 47.
      • We provide...
        • Educational resources for families and professionals
        • A roadmap to medical and social services
        • Referrals to outreach volunteers and other support organizations
        • Strict confidentially
      • Make the referral!
      How we can help...
    • 48.
      • AboutFace USA
        • www.aboutfaceusa.org
      • cleftAdvocate
        • www.cleftadvocate.org
      • Apert International
        • www.apert.org
      • Goldenhar/HFM Network
        • www.goldenharsyndrome.org
      • Crouzon Support Network
        • www.crouzonsupport.org
      • Velocardiofacial/22q Support
        • http://www.vcfsef.org
      • National Foundation for Ectodermal Dysplasia
        • http://www.nfed.org
      • The Phoenix Society
        • www.phoenix-society.org
      • National Institute for Dental and Craniofacial Research
        • www.nidcr.nih.gov
      Resources
    • 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