BABIES COUNT
Babies Count is a national registry of young children aged birth to 36 months of age with visual impairments that works in conjunction with public and private agencies to collect standardized epidemiological and demographic data regarding children, their visual conditions, and the systems created to support them and their families.

Our Story

Babies Count was first created in 1995 and is the only national database in the US to collect epidemiologic and demographic information on infants and toddlers between the ages of birth and 36 months who are blind or visually impaired. Information from this database has been used to make policy and budget decisions, to expand programs, to drive medical and educational research, and to track the changing face of blindness of children in our country today. The database is currently being reconstructed to reflect the ways that data is collected in the 21st century and to meet the evolving needs of participating agencies.

Noted feature changes:

  • The survey has been revised with input and collaboration from stakeholders for ease of completion and fidelity of responses.
  • Each question on the survey has available technical assistance and suggests ways to sensitively gather the information.
  • Data will be entered into the database directly from the survey using a computer, tablet or smart phone. The survey is compatible with both Microsoft and Apple products.
  • It is screen reader compatible.
  • In homes without Internet service, data will be saved in the survey offline and can be submitted after returning to an area with Internet accessibility.
  • Online webinar training will be available.
  • The survey will be available from this website: www.babiescount.org beginning March 1, 2016.

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The face of blindness is changing...

2020-2021 Results

Babies Count National Registry of Children with Blindness or Visual Impairment (BVI) - aged birth to 36 months

Citation: Snyder, D., Rife, D., & Lyle, L. (2022). Babies Count National Registry of Children with Blindness or Visual Impairment, Aged Birth to 36 Months: 2020 and 2021 Results. Babies Count. https://babiescount.org

Critical Ages of Diagnosis of Eye Condition, Referral to BVI Services, and Enrollment to BVI Services Age of DX (mo) Age of Referral (mo) Age at Enrollment (mo)
CVI/DVM 9.6 11.5 12.6
ONH 5.8 9.3 10.1
ROP 3.2 10.4 11.5
Albinism 4.8 10.2 11.4
Structural 3.4 8.1 8.9
Retinal 9.1 10.1 11.1
Other 8.6 13.3 14.2
Unknown/none 9.9 12.3 13.2
All Eye Conditions 7.5 11.5 12.4
Primary Eye Condition n %
Cortical/Cerbral Visual Impairment (CVI) 905 30.4%
Optic Nerve Hypoplasia (ONH) 267 9.0%
Retinopathy of Prematurity (ROP) 249 8.4%
Albinism 109 3.7%
Structural Eye Anomaly 203 6.8%
Retinal Condition (unspecified) 170 5.7%
Other 706 23.7%
Unknown/none 365 12.3%
Total 2974 100.0%
Gestational Age (at birth) n %
Full Term 1556 52.3%
37 to 33 weeks 632 21.4%
32 to 28 weeks 247 8.3%
27 weeks or less 292 9.7%
Unknown 248 8.3%
Total 2974 100.0%
Non-Accidental Trauma (NAT) Caused BVI n %
Not a NAT 2688 90.4%
NAT 137 4.6%
Unknown 149 5.0%
Total 2974 100.0%
Concurrent Medical Condition n %
None 809 27.2%
Neurological 1884 63.3%
Autism spectrum disorder (ASD) 68
Cerebral palsy/orthopedic impairment 741
Seizures 691
Congential brain disorder 194
Acquired brain disorder 179
Spina bifida 12
Global syndrome 368 12.4%
Chromosomal disorder 139
Hereditary/genetic disorder 163
Cranio facial disorder 51
Mitochondrial/metabolic disorder 15
Endocrine 177 6.0%
Deaf/hard of hearing 243 8.2%
Feeding Issues 964 3.2%
Other 1078 36.2%
Respiratory problems 469
Heart disease 251
Technology dependent 137
Allergies 121
Kidney/Liver condition 13
Born with addiction 26
Cancer 18
Gastroesophageal reflux disease (GERD) 15
inter-utero viral infection 16
Sleep issues 6
Blood condition 3
Skin condition 3
Level of Vision n %
Meets definition of blindness 398 13.4%
Functions at the definition of blindness 616 20.7%
Low vision 1144 38.5%
Typical or near typical 799 26.9%
Unknown/no report 17 0.5%
Total 2974 100.0%
Level of Support Needs n %
Typical support needs 398 13.4%
Mild/moderate support needs 1455 48.9%
Intensive support needs 1105 37.2%
Unknown/no report 16 0.5%
Total 2974 100.0%
Primary Learning Channel n %
Vision 1385 46.6%
Tactual 334 11.2%
Auditory 692 23.3%
Unknown/no report 563 18.9%
Total 2974 100.0%
State n %
Arizona 24 0.8%
Colorado 47 1.6%
Iowa 44 1.5%
Indiana 138 4.6%
Kentucky 199 6.7%
Maryland 344 11.6%
Massachusetts 410 13.8%
Nebraska 22 0.7%
New Mexico 427 14.4%
North Dakota 27 0.9%
Northern California 261 8.8%
Southern California 80 2.7%
Utah 467 15.7%
Vermont 15 0.5%
Washington 438 14.7%
Wisconsin 31 1.0%
Total 2974 100.0%
Transition n %
Reason for Exit
   Turned 3/aged out 626 65.8%
   Family moved 62 6.6%
   No longer in need 157 16.5%
   Parent declined/unable to contact 76 8.0%
   Deceased 25 2.6%
   Unknown/unreported/NA 5 0.5%
Total 951 100.0%
Next/Receiving Program
   Public school preschool program 417 43.9%
   Preschool at agency/center for BVI 61 6.4%
   Head Start or community preschool 71 7.5%
   Home school 44 4.6%
   Unknown/unreported/NA 341 35.9%
   Continue Part C services 17 1.8%
Total 951 100.0%
Specialized BVI Services in Next Program
   Yes 474 49.8%
   No 228 24.0%
   Unknown/unreported/NA 249 26.2%
Total 951 100.0%

The Babies Count National Registry's effectiveness and reliability is dependent upon the quality work of each state and each service provider entering data. The basic structure is as follows:

  • Each state will assign a lead agency in the database and then enroll the individual agencies within the state that serve B-3 children who are blind/visually impaired.
  • Each individual agency will create its own system for completion of surveys and training its staff.
  • And finally, each agency, including service providers, must become committed to collecting this data for each child on his or her caseload, both at entry and at exit to the program.
  • Each state’s lead agency as well as each individual agency will have access to its own data for analysis and planning purposes.
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Participating States

Babies Count will only work if, together, we create systems in every state to help us collect this essential data. States currently enrolling children:

  • Arizona
  • California
  • Colorado
  • Connecticut
  • Delaware
  • Florida
  • Illinois
  • Indiana
  • Iowa
  • Kansas
  • Kentucky
  • Maryland
  • Massachusetts
  • Nebraska
  • New Mexico
  • North Dakota
  • Pennsylvania
  • Tennessee
  • Utah
  • Vermont
  • Washington
  • Wisconsin
  • Wyoming