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for the Blind

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Research Navigator: Hey Baby! We’ve Got Your Numbers!

Population and Demographic Statistics for Infants and Toddlers who are Blind or Visually Impaired


published May 5, 2015

What to look for in this edition of the Navigator

  • Enumerating Newborns, Tallying Toddlers: We take a look at estimates of vision loss among kiddos ages zero to three as reported by major national surveys.
  • Examining Early Intervention: Data collected by early intervention programs provide additional insight about the youngest children with disabilities.
  • Babies Count! A special research and data collection project provides us with a unique opportunity to better understand prevalence of vision loss in infants and toddlers as well as the timing of the diagnosis and referral processes.
baby playing with toys

About this Series

Welcome to the third edition of AFB’s Research Navigator. This is a quarterly series – accompanying AFB’s DirectConnect newsletter – from the AFB Public Policy Center. The purpose of this series is to keep you informed of user-friendly facts and figures and the latest research pertaining to people with vision loss. The series will also include the necessary background information so you may use the information most accurately. Readers are also encouraged to check out AFB’s Statistical Snapshots on a regular basis. This webpage is regularly updated with a wide variety of information and tools that address commonly asked questions about people with vision loss.

Introduction to the Topic

In the previous edition of the Navigator, we tackled the topic “Just how many blind folks are there anyway?” We looked closely at the various censuses and surveys which report on the numbers of adults with vision loss, and we discussed why no single number is the best descriptor or most accurate indicator of the population of people with visual impairment in the United States. The next two editions of the Navigator will be dedicated to taking a closer look at the population figures for infants, children, young adults, and students with vision loss. Data about the 0-21 population is especially useful for education advocates, policy makers, and researchers, who often ask questions such as “Is the incidence of visual impairment increasing among infants and newborns?”; “How are kids with vision loss doing in school compared to their peers?”; and “How many students read braille?” In addressing these questions, we will review several sources for data and discuss the strengths and challenges of each.

Keep reading for more the numbers and nuances regarding infants and toddlers, and be on the lookout in the next few weeks for a similar breakdown of data about school-aged children and young adults.

Infants and Toddlers: Counting Our Babies

“Survey says...”

Our last edition of the Research Navigator introduced you to the National Health Interview Survey (NHIS) and American Community Survey (ACS), two enormous, national data collection projects which provide self-reported (or, in the case of minors, parent/guardian-reported) data estimates for the civilian, non-institutionalized U.S. population. These surveys include estimates of the prevalence of vision loss in the United States, and – with a little finessing – you can disaggregate the estimates by age and other demographic characteristics. For more about how to access NHIS and ACS data, we encourage you to review our webinars on the ACS, the DataFerrett and the NHIS.

As you will see, problems with self-reported data and a varying definition of “vision trouble” lead to wide variations between NHIS and ACS numbers. Based upon data from the NHIS (2013), approximately 1.5% of the total U.S. population under age 4 was reported by a parent or guardian to have some level of trouble seeing and 0.1% was blind. Due to the small number and high variability of children with vision trouble in their survey sample, the NHIS reported that the actual percentage of infants and toddlers with vision trouble in the U.S. could reasonably be as much as 0.6% over/under their estimate. In the same survey, in 2000, the NHIS estimated that 0.8% of infants and toddlers under age 4 had vision trouble and 0.1% were blind. In 2007, the NHIS estimated that 1.3% of children ages 3 and under had vision trouble, and less than .05% were blind. Note that 0.8% and 1.3% are within the range for which the NHIS reported being confident about their 2013 estimate; therefore, we cannot be statistically confident that there has been a change or a trend in the number of infants with trouble seeing. For additional variability and confidence intervals, see the NHIS data (we recommend trying out the Integrated Health Interview Series online data analysis system at https://www.ihis.us/ihis/sda.shtml).

For the American Community Survey (ACS) from 2013, approximately 0.4% of U.S. children ages 3 and under were estimated to be blind or to have serious trouble seeing. This estimate appears relatively unchanged from 2007, when the ACS estimated that 0.4% of children had vision trouble.

So, which is right? Approximately 1.5% or 0.4%? Like we discussed for the data on adults, this is not a problem with the survey methods. Neither the ACS nor the NHIS is incorrect. During the NHIS survey, more people seem to self-identify (or identify their children) as having “vision trouble;” during the ACS survey, fewer people feel like the survey’s description of vision trouble applies to them. Therefore, we should expect that NHIS’s 1.5% includes children with a wider range of visual limitations. ACS’s 0.4% should be understood as representing a narrower definition of vision trouble, likely those children with more significant visual impairment.

What Do We Know about Infants and Toddlers with Special Healthcare Needs?

Early intervention providers and others sometimes need information about infants with vision loss relative to other populations of children with disabilities. Just as the federal government requires states to report on the numbers of children with disabilities receiving special education (ages 3 to 21), there is also information collected by the Department of Education under by Part C (ages birth to 2) of the Individuals with Disabilities Education Act. However, because most children receiving early intervention qualify under a broad category such as “developmental delay,” rather than a specific label/diagnosis, states are not required to disaggregate their data by disability category. For children who have been identified and are receiving early intervention services under Part C, the federal government only requires states to report the following:

  • “The number and percentage of children with disabilities, by race, gender, and ethnicity, who are receiving early intervention services.
  • The number and percentage of children with disabilities, by race, gender, and ethnicity, who, from birth through age 2, stopped receiving early intervention services because of program completion or for other reasons...
  • The number and percentage of infants and toddlers, by race, and ethnicity, who are at risk of having substantial developmental delays (as defined in section 632), and who are receiving early intervention services under part C” (Section 618 of IDEA 2004).

If not to the Department of Education’s centralized data collection, then where can we turn for early intervention data about children with vision loss? Although not conducted annually, National Survey of Children with Special Health Care Needs (NC-CSHCN) is a good source of data about young children with disabilities, including data disaggregated by disability category. You can search the NC-CSHCN through their new interactive tool at ChildFind.org. The 2009/10 NC-CSHCN was administered to children who were reported by their parents/guardians as having ongoing health conditions. To qualify for the survey, infants and toddlers must have experienced one or more of the following: (1) ongoing need or use of prescription medications; (2) an above routine use of services; (3) need or use of specialized therapies or services; (4) need or use of mental health counseling (5) a functional limitation (Child and Adolescent Health Measurement Initiative, 2007). With respect to vision, this survey allowed parents or guardians to report whether their children experienced a lot, a little, or no difficulty seeing even when wearing glasses or contacts. For the population of children with special healthcare needs ages 0-5 years old, this survey estimated:

  • 4.4% (+/- 1%) had a little difficulty seeing
  • 2.5% (+/- 0.8) had a lot of difficulty seeing.

Unfortunately different implementations of this survey have asked somewhat different questions about vision loss; thus, data is not comparable from one administration of the survey to the next.

Babies Count: Focusing on the Numbers of Babies in Early Intervention

The Babies Count National Registry for Children with Visual Impairments Birth to 3 Years is another important information source for population statistics about the youngest Americans with vision loss, especially because the project is specific to infants and toddlers who are blind/visually impaired. The Babies Count Registry has been overseen by the American Printing House for the Blind (APH) since 2000 and includes data voluntarily reported by early intervention programs. Presently, 29 states are participating in this registry (through state agencies, departments of education, or schools for the blind) (APH, 2015). Babies Count provides a range of data for researchers, including demographics, prevalence of visual impairment, prevalence of additional disabilities, and age of children at referral. According to Hatton, Ivy, & Boyer’s (2013) analysis of Babies Count data from 2005-2011, of all children in the database (children receiving specialized early intervention in programs specific to young children with visual impairments), approximately 60% were legally blind and 65% had additional disabilities.

Given that babies are not necessarily referred for early intervention at the time of onset of visual impairment, it is difficult to accurately measure the number of very young children who are experiencing visual impairment and/or are in need of services. Furthermore, some visual conditions such as retinopathy of prematurity have their onset or are diagnosed weeks to months after a child is born. Retinoblastoma and other conditions may develop in the first few years of life, leading to a later onset of visual impairment than with other congenital/perinatal types of visual impairment. Hatton et al.’s (2013) research found that the average age of diagnosis for infants and toddlers in Babies Count was 4.9 months, and the average age of referral for services was 10.5 months. Standard deviations (measures of the variability of data) for these averages were 5.7 and 7.8 months respectively, meaning that there was quite a bit of variation in the age of referral for Babies Count babies.

Finally, from the 2008 NHIS vision supplement, we can estimate that only 33.4% (+/- 5%) of children ages 0-3 have ever had their vision tested. This low rate of screening increases the potential that there are many uncounted, undiagnosed children with visual impairments. These students may not be receiving early intervention and are most likely not reported in Babies Count numbers. In particular, young children with low-vision conditions may not be identified until they enter preschool or kindergarten and are expected to join with peers in more visually intensive activities like reading, counting, games, etc.

So Can We Really Track Totals and Trends Among Infants and Toddlers?

Given these data sources, with their strengths and limitations, there is presently not enough consistent, reliable information to judge the extent to which the prevalence of visual impairment/blindness among infants and toddlers or the incidence of children being born with visual impairment/blindness is increasing or decreasing in the United States. A search of peer-reviewed journal articles found no recent studies on the epidemiology of, or changes in, the incidence or prevalence of blindness among infants in the United States over the past 20 years. One positive sign is that the National Center for Health Statistics reports the rate of pre-term births (under 37) weeks has been declining since 2006 (12.8% of all births in 2006; 11.4% of all births in 2013) (Martin, Hamilton, Osterman, Curtin, & Matthews, 2015). This decline is also occurring in the rate of very-early (under 28 week gestation) births, from a peak of 0.77% in 2005 to 0.73% in 2013. Since pre-term births and very low birth weights are associated with a greater risk for visual impairments (Blencowe, Lawn, Vazquez, Fielder, & Gilbert, 2013), there may be reason to believe that those types of visual impairments related to prematurity are also declining.

We hope that this issue of the Navigator has increased your understanding of the implications for what we do know about infants and toddlers with vision loss; likewise, we hope that you agree with us that there is a need for more research, earlier identification, and better reporting of population statistics regarding all areas of vision loss. Projects like Babies Count must be sustained and expanded. With better data, we will be more prepared to justify funding and monitor the impact of supports and services, and with earlier, accurate identification, we can work to ensure that all families are provided with access to the interventions and services they need to promote healthy, happy childhoods.

baby crawling along a stone path

References

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