Title:

Restoring caregiver health through story stewardship

Parents and guardians of people with disabilities in the US often work overtime advocating, teaching, and leading in multiple arenas and systems for the human rights and dignity of their loved ones. These caregivers need safe spaces to be seen, listened to, and supported on a human level in their ongoing work. To provide quality, attuned care and model inclusion for their loved ones with disabilities, a caregiver must have spaces where they can experience that care and inclusion themselves. Peer-led restorative circles and story stewardship practices are promising models to provide mutual support, deep listening, and inclusion, in a structure that is inherently healing and power-sharing. This model would lend itself to further peer-led Grounded Theory research that centers the powerful lived-experiences of caregivers of people with complex disabilities in the US. Andrea Dole is a Social Work and Family Trainee from Maine in the NH-ME LEND (Leadership Education in Neurodevelopmental Disabilities) program. Andrea was paired with community organization FASD (Fetal Alcohol Spectrum Disorder) Maine for the Leadership Placement component of the HRSA-funded 300 hour non-degree LEND program. The project was for the LEND Trainee to collaborate with FASD Maine to design a process for gathering stories from stakeholders. Emergent findings during the LEND program year and collaboration with FASD Maine Leadership Mentor Madonna Mooney, led to Andrea's research into ethical story-gathering practices, and an experiential pilot of the process. Andrea Dole is a restorative practitioner and parent to a child with special health care needs (CSHCN). This lived-experience informed the focus on restorative and story stewardship practices, and the interest in Grounded Theory research.

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