Developmental Milestones in Young Children and Infants

with Deafblindness

Julie Durando, NCLVI FellowJulie Durando, NCLVI FellowUniversity of Northern ColoradoUniversity of Northern Colorado

Julie.Durando@unco.eduJulie.Durando@unco.edu

Kay Alicyn Ferrell, Ph.D.Kay Alicyn Ferrell, Ph.D.National Center on Severe & Sensory DisabilitiesNational Center on Severe & Sensory Disabilities

ObjectivesObjectives

1). To share quantitative data on the 1). To share quantitative data on the achievement of developmental milestones in achievement of developmental milestones in infants and children who are deafblind, and infants and children who are deafblind, and

2). To discuss the implications of the findings 2). To discuss the implications of the findings for early intervention and educational for early intervention and educational planning for young children who are planning for young children who are deafblind. deafblind.

Project PRISMA National Collaborative Study on the Early Development of Children

with Visual Impairments

Collaborating Agencies• Anchor Center for Blind Anchor Center for Blind

ChildrenChildren• Blind Childrens CenterBlind Childrens Center• Dallas Services for Visually Dallas Services for Visually

Impaired ChildrenImpaired Children• The Foundation for Blind The Foundation for Blind

ChildrenChildren• New Mexico School for New Mexico School for

the Visually Handicapped the Visually Handicapped PreschoolPreschool

• Visually Impaired Visually Impaired Preschool ServicesPreschool Services

Laurie HudsonTom Miller

Debbie Gleason

Sharon BensingerTerry GoldfarbSuze Staugus

Earl PalmerMirna PinedaMary Ellen McCannMarion YoshidaDavid WarrenLynne Webber

J GreeleyAllen HuangJanis MountfordMadeline MilianBill MuirRichard GibboneyJohn JostadRose ShawBeth TeetersDean TuttleDin Tuttle

Chris TompkinsAmy MurphyKelly ParrishDiane Pena

Tina SustaetaKathy Tompkins

Patti Watts

Fran BlackBetty Dominguez

Patrika GriegoDana KingSharon Nichols

Carol DanielsonCarol King

Sally J. DeitzDeborah Hatton

KirchnerJim WarnkePrism PeoplePrism People

Brenda HoyJan Nash

Schel Nietenhoefer

Debbie SymingtonAnn Estensen

Pam CraneDonald P. Bailey

Verna HartMarianne Riggio

Stuart Teplin

Corinne

Colorado

17.8%

California

5.4%Texas

11.4%

Arizona

31.2%

New Mexico

14.4%

Massachusetts

6.4%

Kentucky

13.4%

Home StatesHome States

Subject SelectionSubject Selection

• New referrals to collaborating agenciesNew referrals to collaborating agencies• Less than 12 months’ CALess than 12 months’ CA• Diagnosed visual impairment, with or without Diagnosed visual impairment, with or without

additional disabilities and/or health conditionsadditional disabilities and/or health conditions

Child Measures

• Teller Acuity CardsTeller Acuity Cards• Battelle Developmental Battelle Developmental

InventoryInventory• Vineland Scales of Vineland Scales of

Adaptive BehaviorAdaptive Behavior• Temperament ScalesTemperament Scales

• Milani-Comparetti Milani-Comparetti Motor Development Motor Development Screening TestScreening Test

• ABILITIES IndexABILITIES Index• Medical and health Medical and health

questionnairesquestionnaires

Family MeasuresFamily Measures

• Demographic informationDemographic information• Parenting Stress IndexParenting Stress Index• Family Resource ScaleFamily Resource Scale• Home Observation and Measurement of the Home Observation and Measurement of the

Environment (HOME)Environment (HOME)

Service MeasuresService Measures

• Amount, type, and extent of special education Amount, type, and extent of special education and related servicesand related services

• Parent satisfaction with servicesParent satisfaction with services• Primary interventionist’s perception of Primary interventionist’s perception of

Family’s participation in servicesFamily’s participation in services

Assessment ProtocolAssessment Protocol

• At referralAt referral– 4 months4 months– 8 months8 months

• 12, 18, 24, 36, 48 months12, 18, 24, 36, 48 months• Project evaluators assess childrenProject evaluators assess children• Parents complete packets and submit directly Parents complete packets and submit directly

to PRISMto PRISM

Training of Project Evaluators

New Evaluator

s

Returning Evaluator

sTotal

New York 1992

9 9

Boulder 1992 8 7 15

Phoenix 1994

4 15 19

Louisville 1995

2 18 20

Denver 1996 19 19

Number of Assessments

TotalMean per

Child

Percent of Possibiliti

es

Battelle 569 2.82 88.2%

HOME 544 2.69 84.3%

Milani 248 1.23 56.1%

Teller 543 2.68 84.2%

Vineland 542 2.68 84.0%

BDI Age Scoresby Additional Disability

321315 511832 441935 412235 573956 6421N =

Additional Disability Status

SevereMildNone

Ag

e e

qu

iva

len

t (i

n m

os.)

40

30

20

10

0

Age Interval

0-5 mos.

6-11 mos.

12-17 mos.

18-23 mos.

24-35 mos.

36-47 mos.

Project Prism Final ReportProject Prism Final Report

• http://www.unco.edu/ncssd/research/PRISM/default.html

Children with DeafblindnessChildren with DeafblindnessAge of Entry Age of Entry

Mean = 8.60 monthsMean = 8.60 monthsStandard Deviation = 2.33 monthsStandard Deviation = 2.33 months

Youngest at entry = 3 monthsYoungest at entry = 3 monthsOldest at entry = 12 monthsOldest at entry = 12 months

NN = 25 = 25

Ethnicity of Children with Deafblindness (n=25)

Child’s Visual DiagnosisChild’s Visual Diagnosis

• Cortical visual impairment = 8 Cortical visual impairment = 8 • Optic nerve hypoplasia = 3 Optic nerve hypoplasia = 3 • Retinopathy of prematurity = 2 Retinopathy of prematurity = 2 • Colobomas = 2 Colobomas = 2 • Glaucoma = 1 Glaucoma = 1 • Myopia = 1 Myopia = 1 • Optic atrophy = 1 Optic atrophy = 1 • Cataracts = 1 Cataracts = 1 • Visual diagnosis not known = 6Visual diagnosis not known = 6

Severity of Additional Impairments

Developmental MilestonesDevelopmental Milestones

• Reaches for and touches objectReaches for and touches object• Generally follows directions related to daily Generally follows directions related to daily

routineroutine• Transfers object from hand to handTransfers object from hand to hand• Removes simple garment without assistanceRemoves simple garment without assistance• Sits alone without support 5 secondsSits alone without support 5 seconds• Walks without support 10 feetWalks without support 10 feet• Produces 1 or more C-V soundsProduces 1 or more C-V sounds

Developmental Milestones Developmental Milestones (Continued)(Continued)

• Copies circleCopies circle• Plays peek-a-booPlays peek-a-boo• Uses pronouns I, you, meUses pronouns I, you, me• Moves 3 or more feet by crawlingMoves 3 or more feet by crawling• Walks down stairs alternating feetWalks down stairs alternating feet• Feeds self bite-size pieces of foodFeeds self bite-size pieces of food

Developmental Milestones Developmental Milestones (Continued)(Continued)

• Uses 2-word utterances to express meaningful Uses 2-word utterances to express meaningful relationshipsrelationships

• Searches for a removed objectSearches for a removed object• Repeats two-digit sequencesRepeats two-digit sequences• Points to at least one major body part when Points to at least one major body part when

askedasked• Controls bowel movements regularlyControls bowel movements regularly

Demonstration of MilestonesDemonstration of Milestones

Sequence Transfer Object Hand to Hand was Demonstrated (n = 11)

Sequence Feeds Self Pieces of Food was Demonstrated (n = 7)

Percentage Demonstrating Milestone

Percentage Demonstrating Milestone

Percentage Demonstrating Milestone

ImplicationsImplications

• Development for children with deafblindness Development for children with deafblindness is especially uniqueis especially unique

• Holistic, multi-disciplinary approach to Holistic, multi-disciplinary approach to assessments, programming and interventionassessments, programming and intervention

• Use caution when interpreting assessmentsUse caution when interpreting assessments

Factors in DevelopmentFactors in Development

• Degree of functional visionDegree of functional vision• Amount of hearingAmount of hearing• Additional ImpairmentsAdditional Impairments• Age of onset of each impairmentAge of onset of each impairment• InterventionIntervention• EnvironmentEnvironment

Holistic, Multidisciplinary Holistic, Multidisciplinary ApproachApproach

• Areas of development are inter-relatedAreas of development are inter-related• Team includes parents and professionals, Team includes parents and professionals,

including persons trained in sensory including persons trained in sensory impairmentsimpairments

• Consider factors and their impact on Consider factors and their impact on developmentdevelopment

Interpret AssessmentsInterpret Assessments with Caution with Caution

• Know limitations of standardized assessments Know limitations of standardized assessments – Norms usually do not include children with Norms usually do not include children with

deafblindnessdeafblindness– Modifications or excluding itemsModifications or excluding items– Does protocol allow child to demonstrate Does protocol allow child to demonstrate

abilities?abilities?

• Guiding intervention Guiding intervention – Consider a different approach to intervention if Consider a different approach to intervention if

development seems stalleddevelopment seems stalled

AcknowledgementsAcknowledgements

Project PRISM was supported by Project PRISM was supported by CFDA 84.0203C CFDA 84.0203C — Field-Initiated Research H023C10188— Field-Initiated Research H023C10188

Julie Durando is a National Center for Julie Durando is a National Center for Leadership in Visual Impairment (NCLVI) Leadership in Visual Impairment (NCLVI) Fellow supported by the NCLVI and OSEP Fellow supported by the NCLVI and OSEP Cooperative Agreement H325U040001 Cooperative Agreement H325U040001