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

Babies Count The 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.

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

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

  3. 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

  4. 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.

  6. 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.

  7. Referral SourcesN = 2,155Data 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

  8. 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. EthnicityN=2,155 1% 4%

  11. Primary LanguageN=2,155 6% 15% 78%

  12. Children’s 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 MonthsN = 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 ConditionsN =1,943 46% 21%

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

  26. Multiple Disability Risk Status and Visual ConditionN = 1,943

  27. Health Conditions 21% 21% Number of Children 15% 15% 14%

  28. Visual Condition and Health ConditionsN = 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 Services1,777 (82%) Consultative VI Services 470 (22%)

  39. 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%)

  40. Early Intervention:Location of ServicesN = 2,155 86%

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