Sam Morgan - Project Director Susanne Morrow - Project Coordinator - - PowerPoint PPT Presentation

Advancing Services Across the Life Span in Intellectual and Developmental Disabilities New York City April 30 – May 3, 2012

New York Deaf-Blind Collaborative

Sam Morgan - Project Director Susanne Morrow - Project Coordinator

What is Deaf-Blindness?

Deaf- Blindness represents the combination

• f 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

Blind nd & Deaf Minimal al Vision

• n &

Deaf Low Vision

• n &

Deaf Deaf

91 + dB Profound

Blind ind & Very y Limite ited Heari ring

Minim nimal al Vision ion & Very ry Limit ited d Hearing ring

Low Vision & Very y Limited ed Hearing

71 – 90 dB Severe

Blind ind & Hard rd-of

• f-

Heari ring

Minimal nimal Vision ion & Hard-

• f
• f-Hear

earing ing

Low Vision n & Hard-of

• f-Hea

Hearing ring

50 – 70 dB Moderately Severe 41 – 55 dB Moderate Blind nd & Func nc Hearin aring

Minimal mal Vision

• n &

Functi tional

• nal Hearing

Low Vision n & Functio ctiona nal Hearing

26 – 40 dB Mild 0 – 25 dB Normal Totally lly Blind nd Light ght Perc rcept ption ion Visual ual Acuit uity 20/ 0/400 400 – 20/100 0/1000 Periph riphera eral l Field eld <20 degr gree ees Visual ual Acuit uity 20/ 0/200 200 – 20/400 0/400 Visual ual Acuit uity 20/ 0/70 70 – 20/200 0/200 Norm rmal al 20/ 0/20 20

Created by Susanne Morgan Morrow, MA, CI, CT - NYDBC

• Common experience of

children with combined hearing & vision loss

• Some degree of functional

vision & hearing

Where most speech

• ccurs.

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

• f various etiologies that

have the potential for hearing & vision issues.

HEREDITARY SYNDROMES AND DISORDERS

CHARGE association 747 Usher Syndrome (I,II,III) 217 Down syndrome (Trisomy 21 syndrome) 262

PRENATAL/CONGENITAL COMPLICATIONS

Cytomegalo-virus (CMV) 332 Microcephaly 288 Hydrocephaly 230 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

• r more additional disabilities
• r 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

17% totally blind or light perception 24% legally blind 21% low vision 17% CVI 1998-2005* 21% other

HEARING LOSS

39% severe to Profound 13% moderate 14% mild 6% CAPD

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 &

Evaluation Records

• 4. Team Meeting

with the Family

• 5. Referral to

Audiologist/ Ophthalmologist

• 3. Interview

the Family

• 6. Follow-up

Meeting with the 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  Malformations of head

and neck

 Malformations of ears  Frequent ear aches or

infection

 Discharge from ears  Makes few or inconsistent

responses to sound

 Does not respond to

caregivers calling name

 Shows a preference for

certain types of sound

 Has limited

vocalizations

 Abnormalities in voice,

intonation, articulation

 Pulls on or covers ears  Breathes through

mouth

 Cocks head to one side

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/

• ptometrists

 Past social histories and evaluations (educational and

psychological)

 Past IEPs

 Family history (deafness)  Prenatal exposure to

maternal infection

 Abnormal prenatal brain

development

 Prematurity  Hypoxia  Syndromes (Down,

CHARGE, Trisomy, Goldenhar’s, etc.)

 Ophthalmic

Syndromes (Leber’s,

• ptic nerve

hypoplasia)

 Bacterial Meningitis  Head Trauma  Cerebral Palsy  Neurodegenerative

(Tay Sachs, Neurofibromatosis)

Chen, D. Essential Elements in Early Intervention, 1999

 Family History  Prenatal exposure to

maternal infection

 Prematurity  Hypoxia  Cleft lip or palate  Craniofacial anomalies  Hyperbilirubinemia  Apgar of less than 3 at

5 minutes

 Prolonged medical

ventilation

 Syndromes (Down,

CHARGE, Trisomy, Goldenhar’s etc.)

 Childhood infection  (meningitis, measles,

mumps)

 Head trauma  CP  Neurodegenerative

(Tay Sachs, Neurofibromatosis)

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

Preparing and supporting parents helps with the process

 Meet with the parents to help them formulate questions to

ask the doctor

 Get them to sign a release in the Dr. office so information

can be requested. Review what items/documents need to be brought to the appointment

• SS card, insurance card, previous medical reports
• Child’s glasses/contact lenses, adaptive equipment

(magnifiers)

• Hearing aids, FM unit, etc.

 Resource lists in tool

 Helping parents understand the information

given by the Medical professional

• What does it mean for their child – prognosis
• What does it mean for their education

 Referral for services

• Educational Vision Services
• Hearing Education Services

 The need for continued follow up

 Critical factors that affect parental knowledge

• f their child:
• Age of the child when they learned of diagnosis
• Age of the child when they enter the program
• How the family received information (diagnosis/

prognosis)

• Experience with doctors
• Experience with early intervention system
• Transition issues

Adapted from materials on “Early Identification of Deafblind” Annette Carey & Sam Morgan

 Emotional stages some families go

thru

▪ Shock ▪ Anger and Fear ▪ Denial ▪ Guilt ▪ Feelings of Isolation ▪ Struggles with family situations ▪ Vulnerability

Emotional support can be offered by

• Listening and “Breaking the ice”
• Being non judgmental
• Learning about their concerns and

expectations

• Identifying cultural priorities
• Providing information (spoken and print) in

a language suitable for the family

Emotional support can be offered by

• Identifying barriers for parental

participation in the school and other necessary appointments /processes

• Offering the networking with other families
• f similar experiences
• Reassuring confidentiality on personal

issues

 Emotional support will grant them: ▪ Acceptance of their situations ▪ Motivation to educate themselves ▪ Hopes ▪ Create a vision for the future ▪ Trust ▪ Participation as partners

 Provide support in identifying children  Child specific consultation  Parent to Parent support  Parent training  School based intensive technical

assistance

 Professional development

• Distance (Moodle online, self-directed

learning) and on-site

www.qc.cuny.edu/nydbc

For free professional development & other content on deaf-blindness please visit our website:

New York Deaf-Blind Collaborative

NYDBC Staff Samuel Morgan, Director Susanne Morrow, Coordinator Clara Berg, Family Specialist Eneida Lamberty, Assistant

• Dr. Patricia Rachal, Principal Investigator

For more information please contact us at the number

• r email below.

Queens College 65-30 Kissena Boulevard PH 200 - NYDBC Flushing, NY 11367 NYDBC@qc.cuny.edu www.qc.cuny.edu/nydbc 718-997-4856