Posted: August 30
The mosquito-born Zika virus has spread to over 34 countries by date, with confirmed cases in the United States, and has thus emerged as the dominant public health concern of 2016. In April, the Centers for Disease Control and Protection concluded that there is “definitive evidence” of a link between the Zika virus and babies being born with serious birth defects. Most recently, on August 26, the Food and Drug Administration called for all blood banks to screen donations for the infection even in states where the virus is not currently circulating as an added safeguard against further transmission.
As an independent federal agency tasked with advising the President and Congress on topics that impact the quality of life of people with disabilities, the National Council on Disability (NCD) remains mindful of its ever-evolving constituency, now to include children who acquire disabilities as a result of being infected by the Zika virus, and their families.
The infectious virus, which can be transmitted by two kinds of mosquitoes and unprotected sexual contact, typically causes only mild flu-like symptoms in the vast majority of adults, but has been linked to a number of potentially serious conditions, especially when a woman is infected during pregnancy. Zika is believed to increase the risk of birth defects. Most notably is an increased risk of microcephaly, which causes children to be born with visably smaller heads than peers unaffected by the virus, combined with the potential of developmental delays in speech and movement, difficulty with balance, and the possibility of seizures. Zika has also been linked to Guillain-Barré Syndrome, a rare disorder affecting the central nervous system.
In decades past, the most common reaction to a diagnosis of this sort would have been to institutionalize a child for his or her entire life. Today, however, decades of available data on developmental disabilities demonstrate that people with significant disabilities can thrive living in the community with the proper supports and services for them and their families.
Federal law requires every state to have an early intervention program that offers services to eligible infants and toddlers up to 36 months old who have significant developmental disabilities or conditions likely to result in disability. But while these programs, typically funded with state and federal dollars, represent a critical support system for children with disabilities and their families, the services provided by them and access to vital supports can vary greatly from state to state. The current Zika pandemic creates an imperative to put information regarding existing supports and services into the hands of medical personnel and others assisting individuals affected by this virus, and presents an opportunity to pursue improvements to and investments in such early intervention services.
Now is the time to increase the capacity for inclusive early childhood development and intervention services and to make individuals, communities and elected officials more aware of both the need for, and the importance of, long-term care to provide future supports and services for people with disabilities within existing communities. As we learned during the polio epidemic, how we respond to Zika will likely impact the quality of life of those affected by the virus, and other conditions like it, not only for the foreseeable future, but for the rest of their lives.