Quality of Life Grants Spotlight: ALS Association of Texas
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:
- Identifies current and potential tasks and skills undertaken by youth.
- Teaches caregiving skills, creating a self-management trajectory.
- Participants engage with and receive support from young people like them.
- Youth and children can increase their self-efficacy and health-related quality of life.
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The YCare program is based at Texas Neurology in Dallas, Texas. Youth aged 8-12 receive YCare training and other community engagement programs. Two of the other programs are grief and bereavement support.
Participation in YCare has significantly increased since the ALS Association of Texas received funds. The program has helped 758 people involved in their Community Engagement Series programs. The program received funds from the Christopher & Dana Reeve Foundation in June 2021. Participation since then has increased significantly in 2022.
The program increased by 587 registered participants – a 92% increase from 2021.
Has an increase of 293 attendees – 84% more than in 2021.
239 attendees were new compared to 2020 – 37% increase.
Participants in the program are actively engaged. One youth reported, “I didn’t know that there were other kids like me.” The kids involved in the YCare training program asked to share phone numbers and have a “reunion pizza party.”
The YCare program is a positive addition to the support the ALS Association of Texas provides to people living with ALS, their families, and loved ones. Including children and youth creates an environment where they can connect with others facing the same or similar issues.
To learn more about the Reeve Foundation’s Quality of Life Grants Program, please see www.ChristopherReeve.org/QOL.
Christina Sisti, DPS, MPH, MS, is a bioethicist and health care policy advocate. She works to create awareness and improve healthcare policy for those with long-term health issues.