Hidden and Unmet Needs: Supporting Kinship Caregivers Raising Children with Disabilities

Nationally, in 2020, 34% of children in foster care were formally placed with kin; nearly 16% of those children in formal kinship care had a diagnosed disability (AFCARS, 2021). Yet estimates vary significantly regarding the prevalence of disabilities or special health care needs in kinship care, as little data exists on the experiences of children with disabilities in informal kinship care. In the presenters' qualitative study, we estimated that 68% of kinship caregiver participants, formal and informal, were raising a child with physical, developmental, mental, or behavioral health challenges. Data shows that children with disabilities experience better permanency outcomes with kinship families compared to non-relative foster caregivers (AFCARS, 2021). However, kinship caregivers experience many challenges, including increased caregiver burden; difficulty navigating multiple, uncoordinated systems; and supporting children with greater needs. Children in kinship care with disabilities are less likely to receive needed special education services than those in non-relative foster care (Casaneuva et al., 2020) and have worse well-being and placement outcomes than those in out of home care without disabilities (AFCARS, 2021). The removal of a child from their parents' care can be traumatic for the entire kinship family. For children with disabilities, this can exacerbate their challenges; others may experience socioemotional or developmental difficulties as a result. Kinship caregivers, more likely to be single women of color and from under-resourced communities, often lack critical community and systemic supports, including financial assistance, system navigation, mental healthcare, and peer relationships. Consequently, they are at greater risk of deeper child welfare system involvement. Therefore, ensuring appropriate and sufficient supports for this population is paramount. Despite a need for wraparound supports, there is a dearth of literature and understanding of the experiences of kinship caregivers raising children with disabilities. This roundtable session will leverage the perspectives of caregivers, professionals, and researchers to discuss: (1) an overview of disability and its prevalence within kinship families; (2) the intersection of childhood trauma and disability; (3) caregiver burden due to navigating multiple uncoordinated systems (4) the interdependence of caregiver and child well-being (5) implications for future research and interventions for this population. We will facilitate a conversation on the complexities of raising children with disabilities as a kinship caregiver and the need for more research and support for caregivers. A researcher and educator will discuss the lack of data on kinship families raising children with disabilities, as well as experiences shared in our qualitative study. A researcher and caregiver support group leader will connect caregiver capacity and burden to child well-being, highlighting the importance of cross-system coordination. Two kinship caregivers will share their experiences raising children with disabilities, including navigating multiple systems of care and advocating for the supports their children need. They will also discuss the impact of raising a child with special needs on their own well-being. We aim to host an honest discussion recognizing the importance of and lack of support for kinship caregivers raising children with disabilities and brainstorming research, practice, and policy solutions to this critical issue.