Kentucky Child Find Initiatives


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Kentucky Child Find Initiatives

  1. 1. Kentucky Child Find Initiatives I. BUILDING PARTNERSHIPS WITH THE MEDICAL COMMUNITY Understanding Risk Factors • Deaf-Blindness • Blind / Visually Impaired • Deaf / Hard of Hearing II. PART C – ELIGIBILITY FOR SERVICES “Established Risk” Conditions What are they? What are the implications for:
  2. 2. • Deaf-Blindness • Blind / Visually Impaired • Deaf / Hard of Hearing
  3. 3. KENTUCKY’S JOURNEY to the Medical Community • AIR (American Institutes for Research) Report - Early Identification Stakeholder Group - Constructing Logic Model • Development of Medical School Presentations - Power Point – Risk Factors - content reviewed by medical personnel - Parent/Family Issues – Presentation - Structure of Presentations • Discussion with Medical Schools - Grand Rounds - Second Year Medical School Students - Neo-natal Personnel - College of Nursing - Community Colleges (Nursing/Alllied Health) • “Dry run” in UK and UL Special Education Classes
  4. 4. - Spring and Summer 2004 - Infuse in future coursework – education emphasis • Implementation for Medical Community – Fall 2004 • Power Point Presentation Dissemination – Spr. 2005 PART C – EARLY INTERVENTION “ESTABLISHED RISK” Conditions • What do we mean by “established risk” ? • What is your state’s criteria for eligibility specific to “established risk” ? • Where to find your state’s “established risk” list ? - Part C state regulations
  5. 5. - Part C policy & procedures - Part C website • “Established Risk” – Implications to Deaf- Blindness, B/VI and D/HH - Kentucky Resource Guide - 289 “Established Risk” conditions - Rubric – Sensory Characteristics - Target Completion Date: Spring 2005 • Other Potential Partners for Child Find - Part C / Point of Entry - Health Departments - Neo-natal Clinics - Genetics Clinics - Title V Clinics - Pediatricians / Board of Pediatrics - Gynecologists - Neurologists • Information Packet to Potential Partners - Target Completion Date: Summer 2005 KENTUCKY – PART C “Established Risk” Conditions
  6. 6. as of April 2004 Aase-Smith syndrome Biotinidase Deficiency Aase syndrome Bixler syndrome Acrocallosal syndrome Blackfan-Diamond syndrome Acrodysostosis Bobble Head Doll syndrome Acro-Fronto-Facio-Nasal Dysostosis Borjeson-Forssman-Lehmann syndrome Adrenoleukodystrophy Brachial Plexopathy Agenesis of the Corpus Callosum Brancio-Oto-Renal (BOR) syndrome Agyria Campomelic Dysplasis Aicardi syndrome Canavan Disease Alexander’s Disease Carbohydrate Deficient Glycoprotein syndrome Alper’s Syndrome Cardio-Facio-Cutaneous syndrome Amelia Carpenter syndrome Angelman syndrome Cataracts – Congenital Aniridia Caudal Dysplasia Anophthalmia/microphthalmia Cerebro-Costo-Mandibular syndrome Antley-Bixler syndrome Cerebellar Aplasia/Hypoplasia/Degeneration Apert Syndrome Cerebral Atrophy Arachnoid cyst with neuro- developmental delay Cerebral palsy Arhinencephaly Cerebro-oculo-facial-skeletal syndrome Arthrogryposis CHARGE Association Ataxia Chediak Higashi syndrome Atelosteogenesis Chondrodysplasia Punctata Autism Christian syndrome Baller-Gerold syndrome Chromosome Abnormality
  7. 7. - unbalanced numerical (autosomal) - numerical trisomy (chromosomes 1-22) - sex chromosomes XXX;XXXX;XXXXX;XXXY; Bannayan-Riley-Ruvalcaba syndrome Bardet-Biedl syndrome Bartsocas-Papas syndrome Beals syndrome (congenital contractural arachnodactyly) CNS Aneurysm with Neuro- Developmental Delay CNS Tumor with Neuro- Developmental Delay Cockayne Syndrome Fatty Acid Oxidation Coffin Lowry syndrome Femoral Hypoplasia Coffin Siris syndrome Fetal Alcohol syndrome/effects Cohen syndrome Fetal Dyskenesia Cone Dystrophy Fetal Hydantoin syndrome Congenital Cytomegalovirus Fetal Valproate syndrome Congenital Herpes Fetal Varicella syndrome Congenital Rubella FG syndrome Congenital Syphilis Fibrochondrogenesis Congenital Toxoplasmosi Floating Harbor syndrome Cortical Visual Impairment Fragile X syndrome Costello syndrome Fretman-Sheldon (Whistling Facies) syndrome Cri du Chat syndrome Fryns syndrome Cryptophthalmos Fucosidosis Cutis Laxa Glaucoma – Congenital Cytochrome-c Oxidase Deficiency Glutaric Aciduria Type I & Type II Dandy Walker syndrome Glycogen Storage Disease DeBarsy syndrome Goldberg-Shprintzen syndrome DeBuquois syndrome Grebe syndrome Dejerine-Sottas syndrome Hallermann-Streiff syndrome DeLange syndrome Hays-Wells syndrome DeSanctis-Cacchione syndrome Head Trauma with Neurological Sequelae/Developmental Delay Diastrophic Dysplasia Hearing Loss (30dB or greater in better
  8. 8. ear as determined by ABR audiometry or audiometric behavioral measurements DiGeorge syndrome (22q11.2 deletion) Hemimegalencephaly Distal Arthrogryrosis Hemiplegia/Hemiparesis Donohue syndrome Hemorrhage-Intraventricular Grade III or Grade IV Down syndrome Hereditary Sensory Motor Neuropathy (Charcot Marie Tooth Disease) Dubowitz syndrome Herrmann syndrome Dyggve Melchor-Clausen syndrome Heterotopias Dyssegmental Dysplasia Holoprosencephaly (Aprosencephaly) Dystonia Holt-Oram syndrome EEC (Ectrodactyly-ectodermal dysplasia- clefting) syndrome Homocystinuria Encephalocele Hunter syndrome (MPSII) Encephalo-Cranio-Cutaneous syndrome Huntington Disease Encephalomalacia Hurler Syndrome (MPSI) Exencephaly Hyalanosis Facio-Auriculo-Radial Dysplasia Marshall syndrome Facio-Cardio-Renal (Eastman-Bixler) syndrome Marshall-Smith syndrome Familial Dysautonomia (Riley-Day syndrome) Maroteaux-Lamy syndrome (MPS VI) Fanconi Anemia Maternal PKU Effects Farber syndrome Megalencephaly Hydranencephaly MELAS Hydrocephalus Meningocele (cervical) Hyperpipecolic Acidema MERRF Hypomelanosis of ITO Metachromatic Leukodystrophy Hypophosphotasia-Infantile Metatropic Dysplasia Hypoxic Ischemic Encephalopathy Methylmalonic Acidemia I-Cell (mucolpidosis II) Disease Microcephaly
  9. 9. Incontinentia Pigmenti Microtia-Bilateral Infantile Spasms Midas syndrome Ininencephaly Miller (postaxial acrofacial-dysostosis) syndrome Isovaleric Acidemia Miller-Dieker syndrome Jarcho-Levin syndrome Mitochondrial Disorder Jervell syndrome Moebius syndrome Johanson-Blizzard syndrome Morquio syndrome (MPS IV) Joubert syndrome Moya-Moya Disease Kabuki syndrome Mucolipidosis II, III KBG syndrome Multiple congenital anomalies (major organ birth defects) Kenny-Caffey syndrome Multiple Pterygium syndrome Klee Blattschadel Muscular Dystrophy Klippel-Feil Sequence Myasthenia Gravis – Congenital Landau-Kleffner syndrome Myelocystocele Lange-Nielsen syndrome Myopathy – Congenital Lanqer Giedion syndrome Myotonic Dystrophy Larsen syndrome Nager (Acrofacial Dysostosis) syndrome Laurin-Sandrow syndrome Nance Horan syndrome Leber’s Amaurosis NARP Legal Blindness (bilateral visual acuity of 20/200 or worse corrected vision in better eye) Neonatal Meningitis/Encephalitis Leigh Disease Neuronal Ceroid Lipofuscinoses Lennox-Gastaut syndrome Neuronal Migration Disorder Lenz Majewski syndrome Nonketotic Hyperglycinemia Lenz Microophthalmia syndrome Noonan syndrome Levy-Hollister (LADD) syndrome Ocular Albinism Lesch-Nyhan syndrome Oculocerebrocutaneous syndrome Leukodystrophy Oculo-Cutaneous Albinism Lissencephaly Optic Atrophy Lowe syndrome Optic Nerve Hypoplasia Lowry-Maclean syndrome Septo-Optic Dysplasia
  10. 10. Maffucci syndrome Shaken Baby syndrome Mannosidosis Short syndrome Maple Syrup Urine Disease Sialidosis Marden Walker syndrome Simpson-Golabi-Behmel syndrome Oral-Facial-Digital syndrome Type I-VII Sly syndrome (MPS VII) Osteogenesis Imperfecta Type III-IV Smith-Fineman-Myers syndrome Osteopetrosis (Autosomal Recessive) Smith-Limitz-Opitz syndrome Oto-Palato-Digital syndrome Type I-II Smith-Magenis syndrome Pachygyria Sotos syndrome Pallister Mosaic syndrome Spina Bifida (Meningomyelocele) Pallister-Hall syndrome Spinal Muscular Atrophy Pelizaeus-Merzbacher Disease Spondyloepiphyseal Dysplasia Congenita Pendred’s syndrome Spondylometaphyseal Dysplasia Periventricular Leukomalacia Stroke Pervasive Developmental Disorder Sturge-Weber syndrome Peters Anomaly TAR (Thrombocytopenia-Absent Radii syndrome) Phocomelia Thanatophoric Dysplasia Pierre Robin Sequence Tibial Aplasia (Hypoplasia) Poland Sequence Toriello-Carey syndrome Polymicrogyria Townes-Brocks syndrome Popliteal Pterygium syndrome Treacher-Collins syndrome Porencephaly Trisomy 13 Prader-Willi syndrome Trisomy 18 Progeria Tuberous Sclerosis Propionic Acidema Urea Cycle Defect Proteus syndrome Velocardiofacial syndrome (22q11.2 deletion) Pyruvate Carboxylase Deficiency Wildervanck syndrome Pyruvate Dehydrogenase Deficiency Walker-Warburg syndrome
  11. 11. Radial Aplasia/Hypoplasia Wiedemann-Rautenstrauch syndrome Refsum Disease Williams syndrome Retinoblastoma Winchester syndrome Retinoic Acid Embryopathy Wolf Hirschhorn syndrome Retinopathy of Prematurity Stages III, IV Yunis-Varon syndrome Rett syndrome Zellweger syndrome Rickets Rieger syndrome Roberts SC Phocomelia Robinow syndrome Rubinstein-Taybi syndrome Sanfilippo syndrome (MPS III) Schinzel-Giedion syndrome Schimmelpenning syndrome (Epidermal Nevus syndrome) Schizencephaly Schwartz-Jampel syndrome Seckel syndrome