Lack of appropriate education for children with significant special needs

September 14, 2020
Dr. Cara O'Neill, Cure Sanfilippo Foundation

Cara O’Neill, MD, FAAP
Chief Science Officer & Co-Founder
Cure Sanfilippo Foundation

The pandemic has Cure Sanfilippo Foundation embarking on some new advocacy work by Chief Science Officer Cara O’Neill.Many, many children with significant special needs, especially children with Sanfilippo Syndrome, have not received appropriate education since the shutdown due to the pandemic.

Seeing this, Dr. O’Neill reached out to Dr. Julie Eisengart, a frequent collaborator at the University of Minnesota.

Dr. Eisengart is a neuropsychologist and now leads the neurodevelopmental rare disease center at the University of Minnesota.

The pandemic has Cure Sanfilippo Foundation embarking on some new advocacy work by Chief Science Officer Cara O’Neill.Many, many children with significant special needs, especially children with Sanfilippo Syndrome, have not received appropriate education since the shutdown due to the pandemic.

Seeing this, Dr. O’Neill reached out to Dr. Julie Eisengart, a frequent collaborator at the University of Minnesota.

Dr. Eisengart is a neuropsychologist and now leads the neurodevelopmental rare disease center at the University of Minnesota.

O’Neill asked if she and her colleagues could offer insight to the broader community (including educators) about the unique needs of children with Sanfilippo Syndrome and other disorders and the impact/inappropriateness of “virtual” learning.

The goal is to collaborate to publish a paper or opinion piece that can be used by parents as a tool to further educate their school systems and advocate for their child to be offered an appropriate education.

O’Neill has also reached out to the National MPS Society to discuss this issue, which is greatly affecting our community, and to collaborate on this important issue.

“This paper and advocacy could benefit some of the other forms of MPS that have a significant impact on neurocognition,” said O’Neill. “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.”

Everyone is invited to share how their child’s education needs have been impacted during COVID, as well as experiences in your special needs child receiving education services. Send your experiences to Contact@CureSanfilippoFoundation.org.

Update

Cure Sanfilippo Foundation, the University of Minnesota Neurodevelopmental Rare Disease Program, Project Alive (MPS II), and the National MPS Society created an openly-available publication, “Issues of COVID-19-related distance learning for children with neuronopathic mucopolysaccharidoses.”

The open-access publication, “Issues of COVID-19-related distance learning for children with neuronopathic mucopolysaccharidoses,” highlights the massively-important role that educators and therapists play in supporting the neurocognitive function and quality of life of children with neurodegenerative diseases. This provides a resource for how educators and therapists can best serve these children in pandemic circumstances and important concepts regarding their education in general.

The academic paper has been distilled into actionable items for educator
The extensive publication has also been boiled down into a White Paper with key takeaways. The white paper, “Lasting Lessons from the Pandemic: Advancing the Understanding of Special Education and Therapeutic Needs of Children with Neurodegenerative Disorders,” provides educators and administrators with information they can begin implementing immediately.

These guidelines review factors to consider as parents and educators plan for the academic year ahead and determine how to provide for children with neurodegenerative disorders in circumstances where in-school teaching or in clinic treatment is compromised.

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