NDVS/SB prides itself as an agency that serves people from birth to death. We help those who are experiencing vision loss due to aging find solutions to maintain their independence and happiness. We help those in mid-life find hope and employment solutions, and help them relearn daily living skills like cooking and cleaning after vision loss. We help students learn in new and different ways by determining what accommodations they may need in order to be successful in school and in life. And we serve infants and toddlers, as well as their families, as they navigate sight loss while taking their first steps and their first bites. Just like the students and clients we serve, the babies we serve are all different – they have different diagnoses, different needs, different personalities. But knowing what our babies are experiencing now can help us, as an agency, as a state, and as a country, prepare for the future.
That is the idea behind Babies Count, a national registry of children from birth to 36 months of age who have visual impairments. Demographic and epidemiologic information provided by parents and vision professionals about each child is anonymously entered into a secure online database. Each year, the data is analyzed and shared with the partner agencies who have helped collect the data. The results can then be used to help those agencies better understand current needs, watch as trends emerge or patterns change, and plan for the future. Knowing what babies are experiencing now gives us an idea of what we, as an agency, may need in the future. Even better, this data can be shared with other agencies who serve the blind, and other stakeholders, like legislators and policy makers, who can help initiate change on a state or national level. By participating in Babies Count, NDVS/SB is helping to shape the future of the field of vision loss.
Currently, agencies in 26 states enroll children in Babies Count. Because many states, especially ones with large populations, have multiple agencies serving babies, this does not mean that that all babies in these states are being “counted.” For that to happen, all states and all agencies who serve this age demographic within those states would need to participate in Babies Count, and all parents would need to consent to being included. While families are encouraged to participate, they can opt out of the data collection for any reason. All data is shared anonymously though; no personal information is entered into the survey. When a survey is filled out, a baby is given a Child Code, a number that is attached to that information, instead of a name or any other personal information. The service provider must note that child’s Code so that when the child turns 3 and is exited from Babies Count, the provider can exit the correct child. NDVS/SB has participated in Babies Count since 2020, and because it is the sole agency who serves babies who are blind or have a visual impairment in North Dakota, the data collected gives a strong indication of what the future holds.
Each year NDVS/SB receives the data collected on a state level and nationally, so that we can compare our babies to what the rest of the nation is experiencing. Trends, forecasts, research areas, and areas of need can all be noted by studying this information. What we are seeing as a state is sometimes verified by looking at national data and is other times seen as an anomaly when compared to the national data. Overall what we have found is that even though North Dakota babies only make up about 1% of the national data, our trends reflect what the nation is experiencing as a whole.
Babies Count has limited funding and is run by volunteers. To ensure its mission continues, stable funding is needed and donations are necessary. If you are interested in learning more about Babies Count, visit their website, https://www.babiescount.org/ or email co-coordinators Dorinda Rife (dorinda@dorindarife.com) and Linda Lyle (llylebc@gmail.com).