Supporting Children with Disabilities Lessons from the Pandemic: Proceedings of a Workshop (2022) / Chapter Skim
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1 Introduction
1 Introduction
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At the outset of the workshop, speakers explored key concepts and frameworks necessary to understand efforts to support children with disabilities, reviewed the challenges facing children with disabilities and their caregivers during the pandemic, and highlighted lessons of lived experience from youth with disabilities and caregivers of youth with disabilities (see Appendix A for complete workshop agenda)
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Chapter 8 takes a forward-looking approach, considering how recovery efforts can be inclusive, effective, and help heal communities as we move out of the pandemic. Finally, Chapter 9 summarizes the reflections shared in the workshop's closing sessions. The full meeting agenda alongside biosketches of the planning committee members and workshop presenters appear in the appendices.
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• Access to Services: CYSHCN and their families have timely access to the integrated, easy-to-navigate, high-quality health care and supports they need, including but not limited to physical, oral, and behavioral health providers; home and community-based sup ports; and care coordination throughout the life course. • Financing of Services: Health care and other related services are accessible, affordable, comprehensive, and continuous; they priori tize the well-being of CYSHCN and families.
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: Over the past 2 years, families have felt the weight of the pandemic, natural disasters, social and economic unrest, and the traumatic toll these crises have on their children. Families with children and youth with special health care needs (CYSHCN)
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This workshop, said Houtrow, was designed to use this "fresh new lens" to draw insights from the pandemic to improve services and support for children with disabilities. Specifically, the workshop aimed to: • Explore promising approaches and innovative strategies employed during the pandemic to address challenges faced by children with disabilities and their families, including access to clinical service and treatment needs, home caregiving, and mental health treatment with an emphasis on underserved/under resourced children and families; and • Consider policies and/or practices that might be sustained or imple mented beyond the pandemic to support children with disabilities and their families.
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This took many forms, she said, including difficulty accessing vaccines, lack of special education services, and the shift toward a personal model of risk assessment (e.g., one-way masking) that left vulnerable people less protected.
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For example, prior to the pandemic, attending university classes were challenging due to unreliable transportation and the need for a personal care assistant. Once all classes shifted to remote learning, attending classes was easier and Cowan was able to be more independent with her education.
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Tellado added that the role of a caregiver is to support the selfadvocacy of children and youth with disabilities, and to remember that "our children have the right to care that respects their dignity." Ware encouraged workshop participants to remember how life slowed down during the pandemic and to learn from this experience. "We were moving so fast and the pandemic kind of taught us what was important to us and what mattered to us," she said.
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