Institute for Child, Youth and Family Policy

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Research on Children with Special Needs and Their Families

ICYFP research focuses on the exceptionality of families of children with disabilities, conducting policy-relevant research informed by direct parental experience in raising children with disabilities. Despite language about parental involvement and family-centered services, private and public policy are still not well informed by a thorough understanding of the needs of families of children with disabilities. This partial understanding results in poor coordination, a focus on deficits instead of capacities, and gaps in family supports.  Our goal is to use research evidence to inform better private and public policies for families of children with disabilities.

Parental expertise and work is critical for the development and daily life of children with special needs. Parents not only advocate for their children, but are also the repositories of the most thorough knowledge about their children and their needs, and coordinate an often dauntingly complex array of services for their children. Furthermore, parents provide direct services to their children not only regarding assistance with activities of daily living, but also highly-skilled services including nursing, special education and therapeutic supports. ICYFP has developed a “job analysis” approach to characterize the parenting job, including the exceptional demands placed on and tasks performed by these parents. The results of these studies may facilitate a policy discussion among parents, health insurance companies, schools, and employers about the intensity of the parent job (variety and frequency of tasks) and its estimated benefits (i.e., the “shadow” price of services provided by parents). 

ICYFP is also concerned with understanding the working conditions and policies that influence parents’ ability to care and advocate for their children with disabilities. For example, parents’ caregiving demands are often difficult to reconcile with regular work schedules. As a result, they may experience penalties at work such as job loss, foregone wages or need to cut back their work hours, or be unable to carry out their caregiving responsibilities. Therefore, paid medical and family leave and workplace flexibility policies are especially critical for the health and wellbeing of (paid) working parents whose children have a disability.

ICYFP is proud to work with the Lurie Institute on Disability Policy and the Starr Center for Developmental and Intellectual Disabilities at the Heller School. 

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