Kentucky Child Find Initiatives

I.BUILDING PARTNERSHIPS

WITH THE MEDICAL COMMUNITY

Understanding Risk Factors

  • Deaf-Blindness
  • Blind / Visually Impaired
  • Deaf / Hard of Hearing
  1. PART C – ELIGIBILITY FOR SERVICES

“Established Risk” Conditions

What are they?

What are the implications for:

  • Deaf-Blindness
  • Blind / Visually Impaired
  • Deaf / Hard of Hearing

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

- 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

-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

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
- 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 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 ToothDisease)
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
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
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
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