Extremely Intensive Care: Grandparenting Children with Disabilities

• In Event: 2141 - Caregiving and Intergenerational Relationships

Abstract

Childhood disability rates are rising in the US but neither the welfare state nor employers have expanded benefits accordingly, hence families are increasingly relying on grandparents to care for grandchildren with disabilities. Political economic theories suggests that the increase in extremely intensive grandparent care in the US is linked to increasing single parent families and employment among women with younger children, as well as instability of poverty-based welfare programs, lack of enforcement of ADA regulations, and the lack of paid vacation days, sick leave, parental leave, and appropriate child care options for children with disabilities. Based on in-depth interviews with 50 grandparents who care for grandchildren with disabilities, we find that the intensity of grandparent carework is shaped by both the numbers of hours of care, and the types of care, grandparents are providing (Harrington Meyer and Abdul-Malak forthcoming). In addition to providing routine care, helping with feeding, bathing, dressing, medicating, disciplining, transporting, and school work, some grandparents we interviewed provide extremely intensive care that is more constant and medically sophisticated. These grandparents care for grandchildren with disabilities 24 hours a day or handle specialized medical equipment and treatments such as feeding tubes, and oxygen tanks. Many grandparents care for children with disabilities even though they have health problems of their own. Some drive long commutes, give up jobs, or move to new homes to be available to provide needed care to their grandchildren with disabilities. Several have become coresidential or custodial grandparents. Few ever imagined they would be providing this much care. Many told us that they were not getting to wear their grandparent hats; they were too busy wearing parent hats.

Authors

• Madonna Harrington Meyer, Syracuse University

• Ynesse Abdul-Malak, Colgate University