National Center on Severe and Sensory Disabilities 20010 Together we can do more Kansas...

National Center on Severe and Sensory Disabilities 20010

Together we can do more

Kansas Instructional Resource Center for the Visually Impaired

April 15-16, 2010

WHAT’S DIFFERENT ABOUT CHILDREN WITH VISUAL

IMPAIRMENTS

What is Low-Incidence Disabilities?• (3) DEFINITION- . . . the term 'low-incidence disability' means --

– (A) a visual or hearing impairment, or simultaneous visual and hearing impairments;– (B) a significant cognitive impairment; or– (C) any impairment for which a small number of personnel with highly specialized skills and knowledge are needed in order for children with that impairment to receive early intervention services or a free appropriate public education.

20 U.S.C.1400 § 662(c)(3)

• (3) DEFINITION- . . . the term 'low-incidence disability' means --– (A) a visual or hearing impairment, or simultaneous visual and hearing impairments;– (B) a significant cognitive impairment; or– (C) any impairment for which a small number of personnel with highly specialized skills and knowledge are needed in order for children with that impairment to receive early intervention services or a free appropriate public education.

20 U.S.C.1400 § 662(c)(3)

Less than 2% of all children with disabilities, ages 6-21

• (Multiple disabilities, 2.18%)

• Autism, 1.67%• Orthopedic

impairments, 1.26%• Hearing

impairments, 1.21%

• Visual impairments, 0.44%

• Traumatic brain injury, 0.35%

• Deafblindness, 0.03%

• Developmental delay, 0.76%

25th Annual Report to Congress (2005)

Less than one-fifth of 1% of the estimated resident school-age

population

Less than one-fifth of 1% of the estimated resident school-age

population• Multiple disabilities,

0.19%• Autism, 0.15% • Hearing

impairments, 0.11%• Orthopedic

impairments, 0.11%

• Visual impairments, 0.04%

• Traumatic brain injury, 0.03%

• Deafblindness, 0.00%

• Developmental delay, 0.07%

25th Annual Report to Congress (2005)

Tip of the Iceberg Tip of the Iceberg

0

1000

2000

3000

4000

5000

6000

7000

8000

9000

10000

11000

12000

13000

14000

15000

16000

17000

18000

19000

20000

21000

22000

Co

un

t

State

OSEP APH Estimate @ .1% Estimate @ .2%

• Sensory inputs altered– Discrete– Fragmented– Intermittent– Passive

• Incidental learning opportunities• Inductive learning

What’s Different About Low-Incidence Disabilities?

What’s Different About Low-Incidence Disabilities?

Learning, Generally

Learning with Sensory DeficitsLearning with Sensory Deficits

Teaching is different:• More than adjustments to the learning environment;• More than modifications of instructional methods;• More than adaptation of curricula;• More than use of positive behavioral supports and interventions;• More than accommodations . . .

Instruction is Different

• Deliberate not incidental • Parts to wholes• Inductive vs. deductive• Concrete experiences

Developmental Hurdles

• Sensory information• Intersensory coordination• Imitation• Motor

UNDERSTANDING OUR COLLEAGUES

(READINGS)

Evidence-Based PracticeOne of the key strategic goals of the U.S. Department of Education is to "transform education into an evidence-based field." This focus on "what works" includes a call for investment in research-based programs and instructional strategies.

(www.ed.gov)

How To Decide?

• Tradition• Superstition• Anecdote• “Common sense”• Whatever Works• It worked for me . . .

• People's opinions are interesting, but it is not something you want to necessarily base the lives . . . of children on with great confidence.

Reyna (2002)

No Child Left Behind Act of 2001

• Mentions “scientifically-based research” 69-111 times

• Best practices based on scientifically-based research

• Accountability for student proficiency

Scientifically-Based Research

“Research that involves the application of rigorous, systematic, and objective procedures to obtain reliable and valid knowledge relevant to education activities and programs”

No Child Left Behind Act (2001)

Components of Scientifically-Based Research

• Systematic, empirical methods• Rigorous data analysis• Measurements or observational methods• Random assignment or other techniques

to eliminate competing explanations• Sufficient detail and clarity to allow for

replication• Peer-reviewed journal or independent

panel of experts• Appropriate designs and methods for

research question

Characteristics of Reliable Research

• Scientific Method• Replicated• Generalized• Meets rigorous standards• Convergent findings

NCLB, 2001

Evaluating Scientific Research

• Scientific merit (quality)• Relevance (to practice)• Significance (importance)

Evaluating Research

• Is the intervention supported by “strong” evidence of effectiveness?

• If the intervention is not supported by “strong” evidence, is it nevertheless supported by “possible” evidence of effectiveness?

• If the intervention is backed by neither “strong” nor “possible” evidence, one may conclude that it is not supported by meaningful evidence of effectiveness.

http://whatworks.ed.gov

What Works in Education of Students with VI

Few resources exist to help education decision makers differentiate high-quality research from weaker research and promotional claims.

There is no Consumer Reports for blindness and visual impairment.

Literacy, 1963-2003

• Sponsored by Colorado Department of Education

• 652 articles located• 32 qualifying articles

– 10 reported no data– 2 reported data contradictory to conclusions

http://www.unco.edu/ncssd/research/literacy_meta_analyses.shtml

APH Math Meta-Analysis1965-2005

• Conducted in 2005-06• Found and analyzed 125 articles • Found 10 qualifying studies:

– Intervention– Comparison group– Participants with visual impairments, 3-21– With or without additional disabilities

http://www.unco.edu/ncssd/research/math_meta_analysis.shtml

Low Vision Meta-Analysis1964-2006

• Also commissioned by APH• Analyzed 2011 articles• Found 31 qualifying studies:

– Intervention– Comparison group– Participants with visual impairments, B-21– With or without additional disabilities

Qualifying Low Vision Studies

• 7 visual development -- mixed• 15 low vision devices -- positive• 2 print size -- inconclusive• 2 black light -- inconclusive• 2 accommodations -- positive• 3 miscellaneous

National Center on Severe and Sensory Disabilities 2008

Concerns • No replications• Insufficient information reported

– Gender– Additional disability– Placement– Cognitive ability– Visual status

The primary question is not what you know, but

how you know it.Aristotle

Research on early intervention for children with visual impairments has progressed more slowly. . . . This literature reflects a lack of focus on empirical tests of actual intervention models. Indeed, the bulk of published reports address either the application of technological devices or a description of developmental processes for blind children.

Davidson & Harrison, 1997, p. 487

Literature addressing many aspects of early intervention and education for children with visual impairments seems to reflect a pattern of tradition and ordinary knowledge rather than empirically validated practice.

Ross, 2000, p. 1191

Research . . . Is also frequently characterized by specialization and separation from the larger contexts of education, social services, psychology, and medicine in which the children, their families, and their services are embedded.

Zambone, 2000, p. 1196

The literature on the development of children with visual impairments is remarkably devoid of explicit concern for theory.

Warren, 1994, p. 4

Visually Impaired Infants Research Consortium (VIIRC)

• Began as conference proposal– Group organized after submission!

• Consortium of New York City service providers and 1 university faculty

• No money/all volunteer• No agreement on assessment battery

• Identified 21 milestones– Individual biases/concerns

• Existing records or parent information• Published when n = 81

– Ferrell, Trief, Deitz, Bonner, Cruz, Ford, & Stratton (1991)• Nationwide contributions

– Final n = 314

Table 2. Comparison of Age of Acquisition of Selected Developmental Milestones

Milestone and (Median Age of Attainment by

Typical Child (in Months))

Maxfield & Buchholz (1957)

N = 398

Norris, Spaulding, & Brodie (1957)

N = 66

Fraiberg (1977) N = 10

VIIRC (1993) N = 314

Reaches for and touches object (5.4)

Med. 0-12 50% at 9 8.3 8.0

Transfers object from hand to hand (5.5)

8.0

Searches for a removed object (6.0)

12.0

Sits alone without support 5 secs. (6.6)

Med. 13-24 25% at 9 8.0 9.0

Feeds self bite-size pieces of food (7.4) Med. 13-24 12.0 Produces 1 or more consonant-vowel sounds (7.9)

Med. 0-12 12.0

Move 3 or more feet by crawling (9.0)

Med. 13-24 12.0

Plays interactive game (9.7) 12.0 Walks without support 10 feet (13.0)

Med. 25-36 50% at 24 19.3 16.0



Maxfield & Buchholz (1957)

N = 398

Norris, Spaulding, & Brodie (1957)

N = 66


VIIRC (1993) N = 314

Points to at least 1 major body part when asked (17.5)

Removes simple garment without assistance (20.5)

Med. 37-48 30.0

Generally follows daily routine directions (20.5)

30.0

Uses 2-word utterances to express meaningful relationships (20.6)

Med. 37-48 26.3 24.0

Uses pronouns I, you, me (24.0) Med. 49-60 36.0 Controls bowel movements regularly (30.0)

Med. 37-48 34.0

Repeats 2-digit sequence (30.0) Walks down stairs alternating feet (30.0)

Med. 49-60 29.0

Copies circle (33.0) 36.0

What if:• Increase sample size• Increase reliability• Increase rigor• Increase confidence in results

Project PRISMA National Collaborative Study on the Early Development of Children with

Visual Impairments

Funding• U.S. Department of Education, 1991-96• $775,000

– 1/5 for travel• Additional funding from Hilton/Perkins National Program, funded by a grant from the Conrad N. Hilton Foundation of Reno, NV

Research Questions• Developmental Milestones:

– Do children with visual impairments attain developmental milestones at chronological ages that differ from sighted children?– Do they acquire these milestones in a different sequence?

• Are there differences in the rate and sequence of development among children:– With different visual disorders?– With different visual function?– With and without additional disabilities?– Who differ across other variables?

Hopes• Find “truth”• Demonstrate the impact of blindness on development • Prove:

– Young children with visual impairments develop differently– Specialized programs superior– Specialized teachers superior

Collaborating Agencies

• Anchor Center for Blind Children

• Blind Childrens Center• Dallas Services for Visually

Impaired Children• The Foundation for Blind

Children• New Mexico School for the

Visually Handicapped Preschool

• Perkins School for the Blind Preschool

• Visually Impaired Preschool Services

Laurie HudsonTom Miller

Debbie Gleason

Sharon BensingerTerry Goldfarb

Suze Staugus

Earl PalmerMirna PinedaMary Ellen McCannMarion YoshidaDavid WarrenLynne Webber

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

Chris TompkinsAmy MurphyKelly ParrishDiane Pena

Tina SustaetaKathy Tompkins

Patti Watts

Fran BlackBetty DominguezPatrika GriegoDana KingSharon Nichols

CarolDanielsonCarol 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

Subject Selection• New referrals to collaborating agencies• Less than 12 months’ CA• Diagnosed visual impairment, with or without additional disabilities and/or health conditions

Child Measures• Teller Acuity Cards• Battelle Developmental Inventory• Vineland Scales of Adaptive Behavior• Temperament Scales

• Milani-Comparetti Motor Development Screening Test• ABILITIES Index• Medical and health questionnaires

Family Measures• Demographic information• Parenting Stress Index• Family Resource Scale• Home Observation and Measurement of the Environment (HOME)

Service Measures• Amount, type, and extent of special education and related services• Parent satisfaction with services• Primary interventionist’s perception of Family’s participation in services

Assessment Protocol• At referral

– 4 months– 8 months

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

Interobserver Agreement

Trainings Site Visits Project End

Battelle 85.9 92.9 80.6

HOME 88.4 95.1 85.4

Milani 85.6 89.7 75.8

Teller 83.6 89.7 91.0

Vineland 91.2 95.2 83.2

Mean 86.7 92.9 83.2

Training of Project Evaluators

New Evaluators

Returning Evaluators Total

New York 1992 9 9

Boulder 1992 8 7 15

Phoenix 1994 4 15 19

Louisville 1995 2 18 20

Denver 1996 19 19

Mean Chronological Age at Assessment

BDI Interval Number Mean0-5 mos. 36 3.89 mos.6-11 mos. 169 8.95 mos.

12-17 mos. 124 13.06 mos.18-23 mos. 113 18.97 mos.24-35 mos. 109 25.52 mos.36-47 mos. 63 37.46 mos.48-59 mos. 28 49.82 mos.60-71 mos. 1 60.00 mos.

Number of Assessments

Total Mean per Child Percent of Possibilities

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%

Percent Receiving Repeated Assessments

Number of Administrations

1 2 3 4 5 6

Battelle 19.3 20.3 18.8 20.8 12.9 3.0

HOME 20.8 21.3 17.8 24.8 8.9 1.5

Milani 32.7 24.3 8.4 3.5 .5 0.0

Teller 19.3 19.8 21.8 17.5 13.4 .5

Vineland 23.8 20.3 20.3 17.8 11.4 2.5

Parent Assessments

Assessment Number

Family Resource Scale 384

Functional Status II® 409

Health Questionnaire 406

Income 343

Evaluation of services 305

Parenting Stress Index 375

Public assistance 423

Temperament 386

Length of Study

Duration Percent followed

Less than 12 mos. 43.6

12.1-24 mos. 29.7

24.1-36 mos. 20.0

36.1-48 mos. 6.7

Limitations• All participants received services,

– From specialized agencies for visual disabilities.• The intensity, duration, and frequency of services differed across participants.

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

Participation atProject End

4% 1%12%

79%

4%

Active

Moved

Died

Resolved

Withdrew

Family Status atProject End

85.6

14.4 0.5

2 parents

1 parent

0 parents

Self-identified Ethnicity

6115.9

4.91.1

17Caucasian

Hispanic

African-Am

Native Am

Mixed

Primary Language Spoken in the Home

87%

5%

3%

1%

3%

1%

English

Spanish

Eng/Span

Eng/Dan

> 50% Eng

< 50% Non-Eng

Parents’ Information

Age Range

Mean Age

Education Mean

Mothers14 - 44

yrs.27.3 yrs.

13.4 yrs.

Fathers17 - 67

yrs.29.7 yrs.

13.6 yrs.

Household Income

State Below median

Including median

Above median

AZ 53.4% 14.3% 33.3%

CA 55.6% 44.4%

CO 70.0% 10.0% 20.0%

KY 70.8% 8.3% 20.8%

MA 33.3% 8.3% 58.3%

NM 40.0% 25.0% 35.0%

TX 58.3% 25.0% 16.7%

Total 56.4% 13.4% 30.2%

Income by Ethnicity

Ethnicity Below median

Including median

Above median

African-American 100.0

Caucasian 47.7% 15.9% 36.4%

Hispanic 80.0% 5.0% 15.0%

Native American 100.0

Mixed 62.5% 8.3% 29.2%

Total 57.1% 12.9% 30.0%

Gender

58%

42%

Male Female

Birth Order

51%26%

13%8% 2%

1st 2nd 3rd 4th 5th or more

Birth Weights

21%

12%

67%

< 1000 grams 1001-2499 grams 2500 grams or more

Birth Weights by Ethnicity

< 1000 grams

1000-2499 grams

2500 grams

Mean (grams)

African-American 11.1% 33.3% 55.6% 2686

Caucasian 19.6% 10.7% 69.6% 2674

Hispanic 37.9% 17.2% 44.8% 2011

Native-American 100.0% 3303

Mixed 16.7% 6.7% 76.7% 2801

Gestational Age at Birth

20%

18%62%

26 wks or less 26.1-37.9 wks 38 wks or more

Gestational Age by Ethnicity

26 wks or less

26.1-37.9 wks

38 wks or more

African-American 33.3% 66.7%

Caucasian 19.8% 17.1% 63.1%

Hispanic 39.3% 21.4% 39.3%

Native-American 100.0%

Mixed 13.3% 23.3% 63.3%

Birth Weight by Gestational Age

Birth weight

26 wks or less

26.1-37.9 wks

38 wks or more

< 1000 grams 97.4% 8.6%

1000-2499 grams 2.6% 42.9% 5.1%

2500 grams or

more48.6% 94.9%

Significant Correlations• Birth weight and gestational age

– r = .902, p = .000• Hospitalization and gestational age

– r = .900, p = .000• Hospitalization and birth weight

– r = .842, p = .000

Additional Disability

40%

22%

38%

None VI/Mild VI/Severe

(PRISM, 1996, n = 202)

Additional Disability, by Agency

None AdditionalArizona 25.4% 74.6%

California 36.4% 63.6%Colorado 58.3% 41.7%Kentucky 33.3% 66.7%

Massachusetts 46.2% 53.8%New Mexico 37.9% 62.1%

Texas 60.9% 29.1%Total 40.1% 59.9%

Frequency of Additional Disability Categories

0

10

20

30

40

50

Pe

rce

nt

of

all

child

ren

CNS DD Eating Auditory Anomalies Pulmonary

Cardiac Infections Endocrine Genetic All others

Disability Associations

CNS DD Eating AuditoryAnom-alies

CNS 81.3% 72.7% 72.0% 63.6%

DD 76.5% 75.8% 76.0% 59.1%

Eating 28.2% 31.3% 32.0% 36.4%

Auditory 21.2% 23.8% 24.2% 12.5%

Anom-alies 16.5% 16.3% 24.2%

Ethnicity

0

10

20

30

40

50

60

70

Perc

ent

CaucasianHispanic

African-Amer.

Other

Prism

Registry

(PRISM, 1996, n = 202; Registry, 2000, n = 365)

Additional Disability by Ethnicity

None Mild Severe

African-American 44.4% 33.3% 22.2%

Caucasian 39.3% 26.8% 33.9%

Hispanic 31.0% 24.1% 44.8%

Native American 50.0% 50.0%

Mixed 29.0% 12.9% 58.1%

All children 40.1% 22.3% 37.5%

Disability Classifications

0.05.0

10.015.020.025.030.035.040.045.0

Per

cent

PI Pediatrician

None Mild Severe

Visual Disorders of PRISM Children (1996)

Number Percent

Cortical visual impairment 41 20.6

Retinopathy of prematurity 38 19.1

Optic nerve hypoplasia 33 16.6

Structural anomolies 22 11.1

Albinism 16 8.0

Retinal disorders 15 7.5

Anoph-/microphthalmia 10 5.0

All other 22 11.0

Resolved 2 1.0

Changes in Visual Functionby Visual Disorder

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pe

rce

nt

CVI ROP ONH StructuralAlbinism

All others

ImprovedDeclinedNo change

(PRISM, 1996, n = 142)

Changes in Visual Function,by Disability Risk

0%

20%

40%

60%

80%

100%

None Mild Severe

Improved No change Declined

Ethnicity of Visual Disorders

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Per

cen

t

CVI ROP ONH AlbinismStructural

Others

Caucasian

Hispanic

African-Am

Others

(PRISM, 1996, n = 182)

Visual Disorders of Ethnic Groups

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Pe

rce

nt

African-AmCaucasian

HispanicOther

Others

Stuctural

Albinism

ONH

ROP

CVI

(PRISM, 1996, n = 182)

Additional Disability Riskby Visual Disorder

0

10

20

30

40

50

60

70

80

90

100

Per

cen

t

CVI ROP ONH Albinism Structural Others

VI/severe

VI/mild

None`

(PRISM, 1996, n = 199)

T-Test for Teller Card Scores

N Mean log s.d. t df Sig

Project entry 116 .1850 .4015 -.5150 115 .000

Project end 116 .3827 .4079

Age at Project Entry

7.887.26

9.02

7.96

9.38.62

0123456789

10

None Mild Severe

CA

CCA

Delay from Diagnosis to Referral

3.3

8.5

0

1

2

3

4

5

6

7

8

9

Diagnosis

Referral

Children with VI Only

0

10

20

30

40

50

60

0-5 mos.

6-11 mos.

12-17 mos.

18-23 mos.

24-35 mos.

36-47 mos.

48-59 mos.

BDI Age

C.A.

Milestones,by Disability Risk

0

10

20

30

40

50

mon

ths

Reach

XferSearch

SitsFeeds

C+VCrawls

PlaysW

alks

Points

Removes

Follows

2-word

Pronouns

Toilet

Repeats

Stairs

Circle

Past

None Mild Severe

Battelle Age Equivalent Scores,by Disability Risk

05

1015202530354045

BD

I A

ge

Eq

uiv

ale

nt

(mo

s.)

None Mild Severe

No Additional Disability vs. ABILITIES Rank

0

10

20

30

40

50

BD

I a

ge

eq

uiv

ale

nt

(mo

s.)

0-5mos.

6-11mos.

12-17mos.

18-23mos.

24-35mos.

36-47mos.

48-59mos.

None None + #1

0-5 mos. 6-11 mos. 12-17 mos. 18-23 mos. 24-35 mos. 36-47 mos. 48-59 mos.None 2.67 6.45 10.09 15.57 20.334 27.13 40.17Mild 1.75 4.64 7.64 10.79 13.28 19.08 32.5Severe 2 2.77 4.41 7.23 8.78 12.06 12.12

Milestones that Differed Significantly by Disability Risk

0

10

20

30

40

Me

dia

n a

ge

SearchSits

FeedsC+V

CrawlsPlays

WalksPoints

Removes

Follows

2-words

Repeats

None

None Additional

Milestones that Differed Significantly by Gestational Age

North 45.9 46.9 45 43.9

North 45.9 46.9 45 43.9

0

10

20

30

40

Me

dia

n a

ge

ReachSearch

SitsFeeds

C+VCrawls

PlaysPoints

Removes

Follows

2-words

Pronouns

Repeats

Term

Term < Term

Milestones that were NOT Significantly Different

• For disability risk:– Reaches for and touches objects– Transfers objects from hand to hand– Uses pronouns– Controls bowels

• For gestational age:– Transfers object from hand to hand– Walks without support– Controls bowel movements regularly– Walks down stairs alternating feet– Copies circle– Relates past experiences

Milestones that Differed Significantly by Visual Function

• Plays interactive games with adult– Children with NLP acquired behavior significantly later than all other children.– Also impacted by additional disability and prematurity

• Possible interaction effect

Milestones,by Visual Function

0

10

20

30

40

50

Me

dia

n a

ge

Reaches

Transfers

Searches

SitsFeeds

C+VCrawls

PlaysWalks

PointsRemoves

Follows

2-words

Pronouns

BowelsRepeats

StairsCircle

Relates

NLP

MLV

NLP LP SLV MLV

Milestones that Differed Significantly by Visual Disorder

0

5

10

15

20

25

30

35

40

Me

dia

n a

ge

SitsFeeds

C+VCrawls

PlaysWalks

PointsRemoves

2-words

Pronouns

ONH

ROP

ONH Albinism ROP CVI

Significant Differences in Developmental Scores,

by Visual DisorderVineland Battelle

6-11 mos. Yes Yes

12-17 mos. Yes Yes

18-23 mos. Yes Yes

24-35 mos. Yes Yes

48-59 mos. Yes

Sources of Significant Differences

(Scheffe Pairwise Comparisons)

6-11 mos.Albinism > ROP, CVIONH > CVI

12-17 mos.Albinism > ROP, CVIOthers > CVI

18-23 mos.Albinism > ROP, CVIOthers > CVI

24-35 mos. Albinism > All

48-59 mos. None

• Children with no additional disabilities scored significantly lower for all age groups except 0-5 mos.• Large standard deviations

– Comparison of means not sufficient• Range in developmental scores is greater as children become older


by Visual Function


by Visual Function

Vineland Battelle

0-5 mos. Yes

6-11 mos. Yes Yes

18-23 mos. Yes Yes

24-35 mos. Yes

48-59 mos. Yes Yes





0-5 mos.. None

6-11 mos. Moderate low vision > NLP



48-59 mos. Moderate & severe low vision > NLP & LP

Rate of Development,by Disability Risk

• Vineland & Battelle scores higher for children with no additional impairments, across almost all age groups– Not evident at 0-5 mos.– At 48-59 mos., mild additional disability similar to no additional disability

• Effects of mild impairment may disappear over time

Parenting Stress Index• Higher percentage of high scores than in the norming population

– Not on child subscale at 0-5 mos.– Higher scores primarily due to child subscale, not parent subscale

Parent Satisfaction

3

3.5

4

4.5

5

Me

an

0-5 mos.

6-11 mos.

12-17 mos.

18-23 mos.

24-35 mos.

36-47 mos.

Preterm Term

Parent Satisfactionby additional disability

3

3.5

4

4.5

5

Me

an

0-5 mos.

6-11 mos.

12-17 mos.

18-23 mos.

24-35 mos.

36-47 mos.

None Mild Severe

There are three types of lies:

Lies,

Damn lies,

and

StatisticsMark Twain

No Significant Differencesbetween additional disability groups

• Birth weight• Gestation• Parents’ age or education level• Parent evaluation of services• Primary interventionist’s rating of parent

participation

Significant Differencesbetween additional disability groups

• Battelle scores after 5 months• Age at entry

– Additional disability group entered later• Home learning environment at 18-23 and

24-36 months– Lower scores for additional disability group

• Hospitalization after birth– Longer for additional disability group

• Overall health between 6-23 mos.– Additional disability group less healthy

• Child-associated stress at 6-11 mos.– Stress for parents of additional disability group greater

Advantages Not Apparent• Greater visual functioning• Specialized programs• Income• Home learning environment

Apparent Advantages• Higher birth weights• No additional disability• Less hospitalization after birth

Infancy to 18 Months• More toys that are

– Interactive– Manipulative– Problem solving

• More books• More literacy events

Do children with visual impairment attain developmental milestones at chronological ages

that differ from sighted children?

• 12 milestones delayed• 5 milestones within the range of typical

acquisition• 2 milestones acquired early

Do children with visual impairments attain developmental skills in a different sequence than

sighted children?

• 7 milestones acquired in a different sequence

• 3 acquired later:– Searching for dropped object– Feeding bite-size pieces– Crawling 3 or more feet

• 3 acquired later by children with additional impairments:– Walking without support– Controlling bowel movements– Repeats 2-digit sequences

Are there differences in the rate and sequence of development among children with different visual

disorders?

• For 10 milestones, children with ROP acquired skills later than other children with visual impairments

• Children with albinism scored significantly higher Vineland and Battelle scores at ages 6-11, 12-17, and 18-23 months.– Also at 24-35 mos., but only for Battelle

• No significant differences at 36-47 and 48-59 months

Are there differences in the rate and sequence of development among children with varying levels of

visual function?

• Only one milestone demonstrated a significant difference among visual function levels:– Plays interactively with adults.– Children with NLP acquired later

• Differences not apparent for any other milestone

• Milestones acquired in different order by visual function level,– But not statistically significant– No pattern is apparent

• No differences in Vineland and Battelle scores for 0-5, 12-17, or 36-47 month age groups

• At 6-11 and 18-23 mos., children with moderate low vision scored significantly higher than children with NLP• At 24-35 and 48-59 mos., children with moderate low vision scored significantly higher than children with NLP on the Battelle only

Are there differences in the rate and sequence of development between groups of children with and

without additional disabilities?

• Children with additional disabilities generally acquired milestones later

• Age of acquisition was significantly later for children with additional impairments for 12 of 19 milestones

• Children without additional disabilities acquired some milestones (6) sooner, or within the range (4) of typical children

• Vineland and Battelle scores were significantly higher for children with no additional disabilities at all age groups except 0-5 mos.• At 36-47 and 48-59 mos., children with mild additional impairments were more like those with no additional impairment

Are there differences in the rate and sequence of development among children who differ along

various social, cultural, or other variables?

• No differences in development apparent based on income, ethnicity, parent age, parent education, or other socio-cultural variables.

• Age of acquisition for 13 milestones was significantly different for children whose gestation was full-term.– Acquired milestones earlier.

What differences in rate and sequence of development are associated with infant

temperament styles?

• Parenting Stress Index total scores indicate a high proportion of high scores than in the norming sample.

• Greater proportion of higher child subscale scores than in the norming sample, except at 0-5 mos.

• At 6-11 mos., significant difference in developmental scores for children whose parents reported high stress on the child subscale– Developmental scores lower

Thoughts on the Challenges• For children receiving services, degree of visual loss does not appear to have as great an impact on early development as the literature suggests.

– Is blindness really an issue?• Greatest impact occurs with the presence of additional disabilities

– The more severe, the greater the impact

• Children without additional disability and typical intellectual functioning develop within the normal range of their sighted peers– Nevertheless, they seem to be losing 1/10th

of a month per month• Effects of mild impairment may

disappear over time

• Children with additional disabilities comprise approximately 60% of this sample of young children• Children with NLP at project entry still had NLP at project end• Children with LP or greater tended to increase their visual function over time

– Associated with age

• Clinical judgments of project evaluators much better at observing present and predicting future visual function• Children with CVI and ROP most at risk • Children without color (albinism) least at risk

• Tremendous variability within and among children.

Milestones that were NOT Significantly Different

• For disability risk:– Reaches for and touches objects– Transfers objects from hand to hand– Uses pronouns– Controls bowels

• For gestational age:– Transfers object from hand to hand– Walks without support– Controls bowel movements regularly– Walks down stairs alternating feet– Copies circle– Relates past experiences

Milestones that Differed Significantly by Visual Function

• Plays interactive games with adult– Children with NLP acquired behavior significantly later than all other children.– Also impacted by additional disability and prematurity

• Possible interaction effect

• Children with no additional disabilities scored significantly lower for all age groups except 0-5 mos.• Large standard deviations

– Comparison of means not sufficient• Range in developmental scores is greater as children become older

BDI Age Scoresby Visual Function at Project End

26719 341137 381031 331431 552351 1427N =

Visual function at project end

Moderate low visionSevere low visionNLP

Ag

e E

qu

iva

len

t (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.

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.

Rate of Development,by Disability Risk

• Vineland & Battelle scores higher for children with no additional impairments, across almost all age groups– Not evident at 0-5 mos.– At 48-59 mos., mild additional disability

similar to no additional disability

Table 2. Comparison of Age of Acquisition of Selected Developmental Milestones



Maxfield & Buchholz

(1957) N = 398

Norris, Spaulding, &

Brodie (1957) N = 66


VIIRC (1993)

N = 314

PRISM (1998)

N = 202

Reaches for and touches object (5.4)

Med. 0-12

50% at 9

8.3 8.0 8.3

Transfers object from hand to hand (5.5)

8.0 9.3

Searches for a removed object (6.0)

12.0 15.0

Sits alone without support 5 secs. (6.6)

Med. 13-24

25% at 9

8.0 9.0 10.9

Feeds self bite-size pieces of food (7.4)

Med. 13-24

12.0 12.6

Produces 1 or more consonant-vowel sounds (7.9)

Med. 0-12 12.0 10.9

Move 3 or more feet by crawling (9.0)

Med. 13-24

12.0 12.8

Plays interactive game (9.7) 12.0 11.4 Walks without support 10 feet (13.0)

Med. 25-36

50% at 24

19.3 16.0 19.8



Maxfield & Buchholz

(1957) N = 398

Norris, Spaulding, &

Brodie (1957) N = 66


VIIRC (1993)

N = 314

PRISM (1998)

N = 202

Points to at least 1 major body part when asked (17.5)

19.5

Removes simple garment without assistance (20.5)

Med. 37-48

30.0 22.7

Generally follows daily routine directions (20.5)

30.0 24.3

Uses 2-word utterances to express meaningful relationships (20.6)

Med. 37-48 26.3 24.0 28.2

Uses pronouns I, you, me (24.0)

Med. 49-60

36.0 25.8

Controls bowel movements regularly (30.0)

Med. 37-48

34.0 36.5

Repeats 2-digit sequence (30.0) 33.4 Walks down stairs alternating feet (30.0)

Med. 49-60

29.0 33.4

Copies circle (33.0) 36.0 31.8 Relates his/her past experiences (40.0)

Med. 49-60

29.0 37.3

What impact does research have, anyway?

The Good• Collaborative relationships• Working together for common good• Assessment training• Observation opportunities

• Reliable data• Confidence in results• Impact of visual function minimized• Food• Potential of typical development

The Not-So-Goodand Not-So-Bad

• Cheerleader role• Coordination• Time• Counseling• Reminders

• Working with friends– Missing data

• Cause of sequence differences– Artifact or iatrogenic?

The Bad• Did not turn out the way everyone thought it would

– Findings unexpected, unpopular• Reluctance to publish• Reluctance to change status quo• Was it necessary?

The Ugly• Loss of long-term friendships• Building other’s careers • Changing alliances • Self-doubt

Chicken & Egg Questions• Is proximity to typical development due to services received?

– Then why aren’t all children doing better?• Was sequence difference always there?

– Or did early intervention create it?

What Happened to Our Hopes?

Did we find truth? Did we?

Demonstrate the impact of blindness on development? No

Young children with visual impairments develop differently? Yes

Specialized programs superior? No, but . . .

Specialized teachers superior? No (only 3)

What is visual disability?

About the words we choose,About the things we do.

The Words We Choose . .

• Compensatory• Service• Feed• Grieve• Tactilely defensive• Vision stimulation• Partnerships• Vision Specialist

• Alternative• Serve• Eat• Cope• Tactilely selective• Vision development• Privileges• Teacher of Students

with Visual Impairments

The Things We Do . . .• Sonicguides• Vibrators• PVC piping• Flashlights• Little Rooms

• Black lights• Sensory stimulation• Early intervention• Resonance boards• Buncher

Secrets to Collaborative Research?

• Choose collaborators thoughtfully– Like philosophies

• Reduce individual investment• Know the politics

An educator has to question himself or herself about options that are inherently

political, though often disguised as pedagogical to make them more

acceptable within the existing structure. Thus, making choices is most important. Educators must ask

themselves on whose behalf they are working.

Paolo Freire

National Center on Severe and Sensory Disabilities 20010 Together we can do more Kansas...

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