The CACTI Blog: Spina Bifida Awareness
By Jay Dashefsky, CAC Member since 2011
According to the Spina Bifida Association of America, Spina Bifida is “the most common permanently disabling birth defect in the United States.” The disability is a neural tube defect, where the spine of the baby in the womb does not completely close. That is where the name “Spina Bifida” originates, as the name means “Open Spine” or “Cleft Spine.” There are four types, with the most severe being Myelomeningocele. With this form, surgery is required at birth; this prevents infection and keeps the spine safe. This is the kind I have, and I also have hydrocephalus (literally “water on the brain”), which requires a shunt to help regulate the flow of cerebrospinal fluid. For me, Spina Bifida affects certain functions in my daily routine. I also try hard to keep on top of my health, and doing this requires me to adapt daily.
As there are different types of Spina Bifida, not all are alike, and everyone can have different individual needs. I have heard the term “Snowflake Disability” used to describe how no two people with Spina Bifida are the same. For example, some people are able to walk, and some are not. This is one reason why there needs to be more awareness of Spina Bifida; people need to know that one size does not fit all when it comes to the disability. As it stands now, there does not seem to be enough awareness of Spina Bifida. Also, the Arizona Department of Economic Security – Division of Developmental Disabilities (DDD) does not include Spina Bifida as a qualifying developmental disability in order to obtain services(link is external). To include people with Spina Bifida in the DDD services system would require a legislative change. Adding Spina Bifida to the list would mean people with Spina Bifida could obtain services, such as therapies, through the DDD service system. Currently, people with Spina Bifida can explore available resources through their own doctors and insurance plans, or they can find out more options through the Arizona chapter of the Spina Bifida Association(link is external). There are also services that can be found through Children’s Rehabilitative Services (CRS)(link is external). The website for DDD also includes a link to Arizona 2-1-1, for people who do not fit within their eligibility requirements. Here, people can browse their extensive listings and explore available resources for various disabilities. This directory can be found at http://www.cir.org(link is external).
For more information visit Spina Bifida Association’s website, http://spinabifidaassociation.org/what-is-sb/(link is external), as well as the local chapter’s website, at www.sbaaz.org(link is external)
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