Advancing Services Across the Life Span in Intellectual and Developmental Disabilities New York City April 30 – May 3, 2012
Sam Morgan - Project Director Susanne Morrow - Project Coordinator New York Deaf-Blind Collaborative
What is Deaf-Blindness? Deaf- Blindness represents the combination of varying degrees of hearing and vision loss.
Significant variability in experience and development: Congenitally Deaf-Blind Congenitally Blind, Adventitiously Deaf Congenitally Deaf, Adventitiously Blind Adventitiously Deaf-Blind
The federal government defines deaf-blindness as: "concomitant hearing and visual impairments, the combination that creates such severe communication and other developmental and educational needs that they cannot be accommodated in special education in programs solely for children with deafness or children with blindness." FR Dept. of Education, 34 CFR Parts 300 & 303. Vol. 64, No. 48.3/12/99
Why it’s important?
Over 35% of children with hearing loss have an additional disabilities Between 40 and 70% of children with visual impairments have additional disabilities Children with severe and multiple disabilities have the highest incidence rate of vision and hearing impairment Chen, D. (2000). Identifying vision and hearing problems in infants with disabilities. IDA News,27 (3), 1-3.
Kids with multiple disabilities are significantly under-diagnosed in regards to sensory loss; other issues take precedence Mild-moderate levels of loss are exacerbated when combined with another loss
Norm rmal al Visual ual Visual ual Periph riphera eral l Visual ual Light ght Totally lly Blind nd -Common experience of 20/ 0/20 20 Acuit uity Acuit uity Field eld <20 Acuit uity Perc rcept ption ion children with combined 20/ 0/200 200 – degr gree ees 20/ 0/70 70 – 20/ 0/400 400 – 20/400 0/400 20/200 0/200 20/100 0/1000 hearing & vision loss -Some degree of functional 0 – 25 dB vision & hearing Normal 26 – 40 dB Blind nd & Func nc Minimal mal Vision on & Mild Low Vision n & Hearin aring Functi tional onal Hearing Functio ctiona nal Hearing 41 – 55 dB Moderate Low Vision n & Minimal nimal Vision ion & Hard- Blind ind & Hard rd-of of- 50 – 70 dB Heari ring of of-Hear earing ing Moderately Hard-of of-Hea Hearing ring Severe Low Vision & Minim nimal al Vision ion & Very ry Blind ind & Very y 71 – 90 dB Limite ited Heari ring Limit ited d Hearing ring Severe Very y Limited ed Hearing Low Vision on & Minimal al Vision on & Blind nd & Deaf 91 + dB Deaf Deaf Deaf Profound Created by Susanne Morgan Morrow, MA, CI, CT - NYDBC
Where most speech occurs. If hearing is affected within these ranges or is more profound, the student will have difficulty accessing spoken language.
It is important to be aware of various etiologies that have the potential for hearing & vision issues.
HEREDITARY SYNDROMES PRENATAL/CONGENITAL AND DISORDERS COMPLICATIONS CHARGE association 747 Cytomegalo-virus (CMV) 332 Usher Syndrome (I,II,III) 217 Microcephaly 288 Down syndrome (Trisomy 21 Hydrocephaly 230 syndrome) 262 Congenital Rubella 87 POST NATAL/ NON-CONGENITAL Asphyxia 241 Meningitis 208 Severe Head Injury 197 Encephalitis 74 Complication of Prematurity 1171 No Determination of Etiology 1646
Photos courtesy of www.crosscatholic.com, www.nationaldb.org, http://www.kidsdbci.org/
More than 90% of children who are deaf-blind have one or more additional disabilities or health problems and some may be identified as having multiple disabilities rather than deaf-blindness. http://www.nationaldb.org/documents/products/population.pdf
VISION LOSS HEARING LOSS 17% totally blind or 39% severe to Profound light perception 13% moderate 24% legally blind 14% mild 21% low vision 6% CAPD 17% CVI 1998-2005* 21% other ADDITIONAL DISABILITIES 66% cognitive disability 57% physical disability 38% complex health care needs 9% behavior challenges * Nationally 28% of children identified as deaf-blind have CORTICAL VISUAL IMPARIMENT (2009)
NY currently has approximately 600 children identified as Deaf-Blind How many children should we have? ▪ Based on NYS demographics, there should be approximately 900-1,000 students between the ages of 0-21 identified Where are They? ▪ BOCES Programs for children with multiple disabilities (including district 75) ▪ BOCES Programs for children with sensory impairments ▪ Private schools (UCP's, preschools etc.) ▪ Schools for the deaf and schools for the blind ▪ Increasingly in district programs
A Systematic Approach to Identification
1. Conduct Observations 2. Review of Medical & 3. Interview Evaluation Records the Family 5. Referral to 6. Follow-up 4. Team Meeting Audiologist/ Meeting with the with the Family Ophthalmologist Family
How does the child hold his/her head when listening (auditorally or visually) to the speaker? How does the child hold papers with drawings to view them? How does the child hold papers with print on it? How do you gain the child’s attention? If you wave at the child from a distance or at his/her side will the child attend to you?
How does the student handle different environments (large groups, small groups, known and unknown people/objects)? How does the student interact with his/her peers in a visual environment? What does the student do when he/she enters a room that is poorly lit? What does the student do when he/she enters a room with a lot of people?
Atypical appearance of the eyes including eye alignment Unusual eye movements (nystagmus) Unusual eye gaze or head position Absence of visually directed behaviors Rubs eyes often, tearing, redness Absence of a clear black pupil Visible irregularities – sagging eye lids, shape, size, structure Photophobia Chen, D. Essential Elements in Early Intervention, 1999
Cleft lip or palate Shows a preference for Malformations of head certain types of sound and neck Has limited Malformations of ears vocalizations Frequent ear aches or Abnormalities in voice, infection intonation, articulation Discharge from ears Pulls on or covers ears Makes few or inconsistent Breathes through responses to sound mouth Does not respond to Cocks head to one side caregivers calling name Chen, D. Essential Elements in Early Intervention, 1999
What Are you Looking For? Birth history indicating conditions that are associated with sensory impairment Medical reports that include conditions that have a high likelihood of vision and/or hearing impairments Reports from ENT/audiologists and ophthamologist/ optometrists Past social histories and evaluations (educational and psychological) Past IEPs
Family history (deafness) Ophthalmic Prenatal exposure to Syndromes (Leber’s, maternal infection optic nerve Abnormal prenatal brain hypoplasia) development Bacterial Meningitis Prematurity Head Trauma Hypoxia Cerebral Palsy Syndromes (Down, Neurodegenerative CHARGE, Trisomy, (Tay Sachs, Goldenhar’s, etc.) Neurofibromatosis) Chen, D. Essential Elements in Early Intervention, 1999
Syndromes (Down, Family History CHARGE, Trisomy, Prenatal exposure to Goldenhar’s etc.) maternal infection Childhood infection Prematurity (meningitis, measles, Hypoxia mumps) Cleft lip or palate Head trauma Craniofacial anomalies CP Hyperbilirubinemia Neurodegenerative Apgar of less than 3 at (Tay Sachs, 5 minutes Neurofibromatosis) Prolonged medical ventilation Chen, D. Essential Elements in Early Intervention, 1999
Parents and family members are keen and skillful reporters on their child’s use of vision and hearing Families have more opportunities to observe their child’s use of vision and hearing than professionals do Ask both open ended and specific questions on vision and hearing Interview is better than questionnaire as dialogue with parents yields richer information and builds meaningful relationships and ongoing collaboration
Have the preceding steps led you to thinking the student may have a vision or hearing impairment? No set threshold but a set of facts and suspicions Have a summary ready of what you know and what you observed Observation Medical/Educational Parent interview Helping them to understand why it is important and how diagnosis and treatment can help their child
Not an easy experience for parents and not one all parents will willingly follow up on. Issues of access – insurance, transportation, culture and language Emotional issues
Recommend
More recommend
