Babies Count The National Registry for Children With Visual

1
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

2
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.
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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

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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.

5
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.

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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.

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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
  2.1
• California 377 17.5 Arizona
  44 2
• Arizona 260 12.1 Maryland
  38 1.8
• MA 245 11.4 Kentucky 31 1.4
• Colorado 222 10.3 Vermont 23
  1.1
• NC 137 6.4 Missouri 18
  .8
• New Mexico 122 5.7 Iowa 16
  .7
• Illinois 97 4.5 MS
  14 .7
• Ohio 49 2.3 Other
  28 1.3
• Total 2,155

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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

9
DemographicsN 2,155

• Gender Family Status

10
EthnicityN2,155
1
4
11
Primary LanguageN2,155
6
15
78
12
Childrens Ages (Months)
13
Mothers Characteristics
14
Visual Conditions N 2,152
15
Amount of Vision N 2,155
16
Multiple Disability Risk StatusN 2,155
17
Visual Conditions Six Most Prevalent in
SampleN 1,943 90.2 of Sample (2,155)
26
18
11
6
6
5.5
18
Age and Visual ConditionMean Age in Months
N 1,943
19
Age and Visual ConditionMean Age in Months
N 1,943
20
Amount of Vision and Visual Condition
N 1,943
21
Amount of Vision and Visual Condition
N 1,943
22
Other Visual Conditions
30
19.5
16
9.5
9.5
2
1
23
Disabling ConditionsN 2,155
50
20
16
14
24
Disabling Conditions and Visual Conditions
N 1,943
46
21
25
Multiple Disability Risk Status and Visual
Condition N 1,943
26
Multiple Disability Risk Status and Visual
Condition N 1,943
27
Health Conditions
21
21
Number of Children
15
15
14
28
Visual Condition and Health Conditions N
1,943
29
Visual Condition and Health Conditions N
1,943
30
Amount of Vision N 2,155
31
Determining Visual Acuity
32
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)

33
Prevalent Visual Behaviors
44
Number of children
25
20
19
17
15
8
34
Functional Vision AwarenessProportion who
are visually AWARE of
35
Functional Vision AttentionProportion who
visually ATTEND to
36
Functional Vision FollowingProportion who
visually FOLLOW
37
Referral Sources N 2,155
Number of Children
38
Service Description

• Direct VI Services 1,777 (82)
• Consultative VI Services 470 (22)

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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)

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Early InterventionLocation of ServicesN
2,155
86