During the COVID-19 pandemic, the Reeve Foundation’s National Paralysis Resource Center created a special grants category (COVID-19: Addressing Social Isolation) for non-profit organizations to address social isolation by providing programs and projects to support the physical and mental health of people living with paralysis.
The COVID-19 social isolation regulations had a tremendous and equal effect on both children and adults. During this time, many children played the caregiver role to sick and infirmed loved ones, creating an isolating atmosphere.
The ALS Association of Texas recognized the need for a program that focused on the needs of children who are caregivers. Tonya Hitschmann, Managing Director of Care Services, helps guide the organization’s education, programming, and support for individuals living with ALS and their loved ones who are caregivers, including family members aged 7-18.
A $23,525 grant from the Christopher & Dana Reeve Foundation provided the means for Hitschmann to implement YCare. YCare is a modular training skills and support program for children, youth, and young adults who are caregivers to someone with an injury, diagnosis, or illness.
Dr. Melinda Kavanaugh created the program based on her research addressing youth/young caregivers. Over six million youth and children, ages 8-18, provide care to a family member. These children and youth are responsible for activities of daily living, including managing complex assistive devices, feeding, bathing, and toileting.
Participants in YCare are taught by multidisciplinary healthcare professionals trained in YCare protocols. The professionals use a “teach-back” method, allowing participants to ask questions and have hands-on learning one-on-one.
YCare builds or improves self-efficacy, social support, and health-related quality of life. The program: