Policy and Service Implications in the U.S.: An Analysis of the Experience of Parents Caring for a Child with a Disability in Germany

Abstract (50 words): The current study analyzes qualitative interviews with parents in Germany who care for a disabled child. This international study offers important insights for further policy advocacy and service development in the U.S. to better support parents and to increase social justice and inclusivity for children and adults with disabilities.

Proposal (500 words)

Background and Purpose: Parents caring for a child with a disability experience at times additional demands and responsibilities. For example, they must organize medical and therapeutic care, respond to medical emergencies, and advocate for their children’s education. These responsibilities often disrupt work trajectories. Research shows that parents caring for a child with a disability are at increased risk to reduce their work hours or quit their job. They also report forgoing promotions or being ignored for promotions, since they are often stigmatized as bad employees. Research also demonstrates that community services and family-friendly policies can support parents in their care responsibilities, improving employment outcomes and overall well-being.

Methods: Eleven in-depth qualitative interviews were conducted with parents caring for a child with a disability living in Germany. The interviews ranged from 30 to 90 minutes and were conducted in German through video calls. Most participants identified as female (n=10) and cared for one child with a disability (n=10). Physical and neurodevelopmental disabilities were the most often cited type of disability for the children (n=8). The disabled children were on average 14.5 years old. A purposive and snowball sampling strategy was employed reaching out to Lebenshilfe e.V. a non-profit organization in Germany that provides services and engages in policy advocacy related to disability. Thematic analysis was used to examine supports and barriers related to policies and community services experienced by parents.

Results: Three themes were prominent, since they also demonstrate a very different approach to supporting families than currently practiced in the U.S. First, parents received monetary support for the care they provided. The level of reimbursement depended on the level of care provided. Second, all parents reported access to a medical hub that provided wrap-around diagnostic and therapeutic services addressing the child’s often complex medical needs. This reduced the need for parents to coordinate different providers and to figure out for themselves which provider might be best suited to help. Third, inclusion of children with disabilities in K-12 education was still in its early stages and was often challenging to access.

Conclusions and Implications: Study findings provide important implications for service development and policy advocacy in the U.S. For example, financial support and wrap-around services are critical tools to supporting parents. This research also offers insights into already existing strategies of inclusive and effective education in the U.S. and provides insights into additional steps that are needed to live up to the promise of quality education for everyone.