Babies CountThe National Registry for Children With Visual Impairments, Birth to 3 years

Deborah Hatton, Ph.D.University of North Carolina

Burt Boyer, M.A.American Printing House for the Blind

February 25, 2005

Preliminary Data Analysis: Do not share without permission of authors

Model Registry of Early Childhood Visual Impairment Collaborative Group, 1995-2000

• Tanni Anthony• Diana Bramow• Gail Calvello• Kay Ferrell• J Greeley • Patrika Griego• Deborah Hatton• Creig Hoyt• James Jan

• Mary Nelle McLennan• Tom Miller• Dennak Murphy• Marianne Riggio• Lee Robinson• Joyce Nesker Simmons• Julie Smith• Chris Tompkins

Hatton, D.D., & Model Registry of Early Childhood Visual Impairment Collaborative Group. (2001). Model Registry of Early Childhood Visual Impairment: First year results. Journal of Visual Impairment & Blindness, 95 (7), 418-433.

Purpose of National Registry

• Prevalence of visual impairment (VI) in children was not collected in a systematic or consistent manner

• Lack of data for children between Birth – 36 months• Incidence rates of VI, as well as specific visual

diagnoses, have important implications for:– Program development– Evaluation– Personnel preparation– In-service training, and – Funding

Impact of Project

• Establishes a centralized registry of children with visual impairments, birth to three.

• Provides a database to more clearly define the population.

• Allows for development of outcome research and stimulate studies by other professionals (e.g., education, medical, sociological).

• Assists personnel preparation programs to be more responsive to the needs of the field based upon numbers of children who are blind or VI, changing etiologies and geographical distribution of children.

Impact of Project, Continued

• Assists with program development; assessment/evaluation; pre-service/in-service training; advocacy by professionals, parents, organizations; and validates funding for additional related programming.

• Provides APH with database to identify early trends in etiologies and demographics which will help give data and direction to APH for future research and product/materials development.

• Provides a natural transition from the centralized registry for children with VI, birth to three, to the Federal Quota Program.

Mission of Project

• To maintain a national registry of young children, ages birth to 36 months, by working with public and private agencies to collect standardized epidemiological and demographic data on young children with visual impairments.

• To insure that all data are coded to assure confidentiality of children and families.

Referral Sources N = 2,155 Data collected from 1/1/00 through 12/31/04

State N % State N %Utah 389 18.1 W Virginia 45 2.1California 377 17.5 Arizona 44 2Arizona 260 12.1 Maryland 38 1.8MA 245 11.4 Kentucky 31 1.4Colorado 222 10.3 Vermont 23 1.1NC 137 6.4 Missouri 18 .8New Mexico 122 5.7 Iowa 16 .7Illinois 97 4.5 MS 14 .7Ohio 49 2.3 Other 28 1.3

Total 2,155

Present Status of Referral Sources

• Surveys now collected from 29 states (initially 17)

• 4,200 children are presently registered• August 2007 article release by Dr. Paul J.

Rychwalski and Dr. Debra Hatton in the Journal of the American Association for Pediatric Ophthalmology and Strabimus (JAAPOS)

• Next data analysis is due January/February 2008

DemographicsN = 2,155

Gender Family Status

Male54%

Female45%

22%Two

ParentFamily

78%

EthnicityN=2,155

5% 1%

24%

8%4%

58%

Euro-American n = 1254

Hispanic n = 510

African-Am n = 168

Asian n = 91

Other Minorities n = 108

Missing n = 24

4%

1%

Primary LanguageN=2,155

English n=1679

Spanish n=322

Other n=127

78%

15%

6%

Children’s Ages (Months)

Mean (SD) Youngest Oldest

Referral n = 2,154

9.9 (7.4) Birth 35.6

Entry n = 2,155

11.1 (7.6) Birth 36.6

Diagnosis n = 1,979

4.9 (5.4) Birth 38.9

Mothers’ Characteristics

Age

Average (SD) Youngest Oldest

27.3 years (6.5) 13 years 48 years

Education Number %

Graduate school 176 8%

Bachelor’s degree 361 17%

Some college 602 28%

High School 501 23%

< High School 303 14%

Missing 212 10%

Visual Conditions N = 2,152

CVI24%

ROP 16%

ONH 10%

Albinism 5%

Other 21%

Unknown 10%

Struct 5%

Cataracts 3%

Retinal 5%

CVI n = 380

ROP n = 349

ONH n = 208

Albinism n = 107

Structural n = 117

Retinal n = 118

Cataracts n = 73

Unknown n = 212

Other n = 459

Amount of Vision N =2,155Slice 4

0%Slice 5

0%Slice 6

0%Slice 7

0%Slice 8

0%Slice 9

0%Slice 10

0%

NOT Legally Blind24%

Legally Blind40%

Unknown36%

Legally Blind n = 862

NOT LegallyBlind n = 516

Unknown n = 777

Multiple Disability Risk StatusN = 2,155

48%32%

20%

VI Only n = 694

VI/DD n = 437

VI/MD n = 1024

Visual Conditions: Six Most Prevalent in SampleN =1,943 90.2% of Sample (2,155)

0

100

200

300

400

500

600

Nu

mb

er o

f ch

ild

ren

CVI n=509

ROP n=349

ONH n=208

Retinal n=118

Structural n=117

Albinism n=107

26%

18%

11%6% 6% 5.5%

Age and Visual ConditionMean Age in Months N = 1,943

Diagnosis Referral Entry

CVI n = 509

7.0 (6.1) 11.5 (7.6) 12.6 (7.8)

ROP n = 349

2.7 (3.3) 9.6 (6.7) 10.8 (6.9)

ONH n = 208 Albinism n = 107

4.7 (4.8)

3.1 (2.9)

8.3 (7.0)

7.9 (6.4)

9.7 (7.3)

8.9 (6.8)

Age and Visual ConditionMean Age in Months N = 1,943

Diagnosis Referral Entry

Structural Disorders n =117

1.5 (2.9) 6.1 (6.7) 7.0 (6.8)

Retinal Disorders n = 118

5.3 (4.9) 9.5 (6.7) 10.6 (6.8)

Other n = 535

5.3 (6.0) 10.5 (7.8) 11.6 (7.8)

Amount of Vision and Visual Condition N = 1,943

Legally Blind (LB)

Not LB

Unknown/ Missing

CVI n = 509

214 42% 99 19% 196 39%

ROP n = 349

147 42% 76 22% 126 36%

ONH n = 208 Albinism n = 107

133 64% 38 36%

22 11%

29 27%

53 26% 40 37%

Amount of Vision and Visual Condition N = 1,943

Legally Blind (LB)

Not LB

Unknown/ Missing

Structural Disorders n = 117

60 51% 20 17% 37 32%

Retinal Disorders n = 118

58 49% 26 22% 34 29%

Other n = 535

164 31% 186 35% 185 35%

“Other” Visual Conditions

0

100

200

300

400

500

600

700

Num

ber

of c

hild

ren

Nystagmus n=652Strabismus n=421Refractive Errors n=347Field Restrictions n=205Amblyopia n=205Ptosis n=50Enucleation n=15

30%

19.5%16%

9.5% 9.5%

2%

1%

Disabling ConditionsN = 2,155

9%

0

200

400

600

800

1000

1200

Num

ber

of c

hild

ren

Syndrome n=441

Brain Trauma n=341

Cerebral Palsy n=303

Developmental Delay n=1086

Hearing Impairment n=195

50%

20%16% 14%

Disabling Conditions and Visual Conditions N =1,943

DD n = 969

CP n = 284

HI n = 186

SYN n = 399

Brain n=306

CVI 35% 61% 24% 21% 67%

ROP 48% 13% 16% 1% 3%

ONH 8% 5% 9% 5% 6%

Albinism 1% 0% 2% 0% 1%

Retinal Disorders Structural Disorders

4%

4%

2%

0%

6%

16%

15%

12%

2%

1%

OTHER 29% 19% 28% 46% 21%

Multiple Disability Risk Status and Visual Condition N = 1,943

VI Only VI/DD VI/MD

CVI n= 509

63 12% 75 15% 371 73%

ROP n = 349

153 44% 127 36% 69 20%

ONH n = 208

109 52% 43 21% 56 27%

Multiple Disability Risk Status and Visual Condition N = 1,943

VI Only VI/DD VI/MD

Albinism n= 107

93 87% 9 8% 5 5%

Structural Disorders n= 117

51 44% 7 6% 59 50%

Retinal Disorders n= 118

34 29% 12 10% 72 61%

Other n= 535

130 24% 107 20% 298 56%

Health Conditions

0

50

100150

200

250

300

350400

450

500

Seiz Feed Ortho Resp Tech

Seizures n = 465

FeedingProblems n = 446OrthopedicImpairment n = 321RespiratoryProblems n = 319TechnologyDependent n = 296

Nu

mb

er o

f C

hil

dre

n

21% 21%

15% 15%14%

Visual Condition and Health Conditions N = 1,943

Seizures Respiratory Problems

Feeding Problems

Technology Dependent

Orthopedic Impairment

CVI n= 509

215 42% 76 15% 158 31% 2 2% 142 28%

ROP n= 349

30 9% 116 33% 81 23% 65 19% 29 8%

ONH n= 208

32 15% 24 12% 32 15% 12 6% 20 10%

Albinism n= 107

3 3% 6 6% 6 6% 2 2% 0 0%

Visual Condition and Health Conditions N = 1,943

Seizures Respiratory Problems

Feeding Problems

Technology Dependent

Orthopedic Impairment

Structural Disorders n= 117

6 5% 16 14% 28 24% 21 18% 10 9%

Retinal Disorders n= 118

19 16% 14 12% 19 16% 9 8% 11 9%

Other n= 535

90 17% 52 10% 84 16% 64 12% 78 15%

Amount of Vision N =2,155Slice 4

0%Slice 5

0%Slice 6

0%Slice 7

0%Slice 8

0%Slice 9

0%Slice 10

0%

NOT Legally Blind24%

Legally Blind40%

Unknown36%

Legally Blind n = 862

NOT LegallyBlind n = 516

Unknown n = 777

Determining Visual Acuity

9%

17%

3%

65%

1%

6% Preferential Looking,Medical Personnel

Preferential Looking,Service Provider

Observation

Other

Unknown

VEP

Corrective and Prosthetic DevicesN = 2,155

Yes No

Glasses 437 (20%) 1,718 (80%)

Contacts 44 (2%) 2,111 (98%)

Prostheses 45 (2%) 2,110 (98%)

Prevalent Visual Behaviors

0100

200300400500600700800

9001000

Inconsistent VisualFunction n=944

Eccentric Viewing n=543

Light Gazing n=432

Photophobia n=405

Res Objects n=359

Gaze Aversion n=326

Head Shaking n=167

20%19% 17%

25%

44%

Nu

mb

er o

f ch

ild

ren

15%

8%

Functional Vision: AwarenessProportion who are visually AWARE of

Lights Objects

CVI 91% 74%

ROP 91% 77%

ONH 78% 59%

Albinism 99% 94%

Structural Disorders

83% 66%

Retinal Disorders

92% 80%

OTHER 96% 87%

Functional Vision: AttentionProportion who visually ATTEND to

Lights Objects

CVI 76% 60%

ROP 75% 66%

ONH 64% 47%

Albinism 94% 91%

Structural Disorders

62% 56%

Retinal Disorders

81% 71%

OTHER 88% 80%

Functional Vision: FollowingProportion who visually FOLLOW

Lights Objects

CVI 51% 46% ROP 61% 56% ONH 47% 40%

Albinism 89% 87%

Structural Disorders

51% 47%

Retinal Disorders

70% 63%

OTHER 76% 69%

Referral Sources N = 2,155

931812

193

65110

33 110

200

400

600

800

1000

Nu

mb

er

of

Ch

ildre

n

Service Description

Direct VI Services 1,777 (82%)

Consultative VI Services 470 (22%)

Service Providers

Certified VI Teacher 938 (60%)

Orientation/Mobility 153 (10%) Specialist

Non-Certified VI Specialist 169 (11%)

Early Interventionist 140 (9%)

Other 438 (27%)

Early Intervention:Location of ServicesN = 2,155

1%0%

1%

14%

2%

8%HomeSpecializedEarly Inter. CenterDay CareFamily Day CareHospitalResidential 86%