The advocacy effort is being spearheaded by the organization’s chief science officer and co-founder, Cara O’Neill. The goal is to alert school systems of the need for appropriate education during the COVID-19 pandemic for special needs children.
As part of the effort, parents of children with Sanfilippo or other disorders are asked to share how their child’s education needs have been affected since the start of COVID-19. Contributions can be emailed to [email protected].
COVID-19 was declared a pandemic in March by the World Health Organization. Since then, due to social distancing efforts and school shutdowns, many children who have special needs are being educated online at home, which may not be suitable for them.
“Many, many children with special needs, especially children with Sanfilippo syndrome, have not received appropriate education since the shutdown due to the pandemic,” the foundation states in a post on its webpage.
To look into this issue, O’Neill contacted Julie Eisengart, PhD, a neuropsychologist and frequent collaborator with the foundation, who now leads the Center for Neurobehavioral Development at the University of Minnesota.
Eisengart and colleagues are asked to provide insight to educators and the broader community about the unique needs of children with Sanfilippo and other disorders, and the impact of virtual learning. O’Neill has also asked the National MPS Society to publicly discuss the issue and to collaborate with the foundation on its effort.
The goal is to produce a report or opinion piece that parents can use to make their school system aware of the educational needs of these children, and to advocate on their youngster’s behalf.
“This paper and advocacy could benefit some of the other forms of MPS that have a significant impact on neurocognition,” O’Neill said in the announcement. “There are serious inequities that are occurring in terms of the educational system right now for severely disabled children. We are working to help amplify their voices.”
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