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APHA Scientific Session and Event Listing

Recorded presentation

Deborah Allen, ScD, Department of Maternal and Child Health, Boston University School of Public Health, 715 Albany St., Boston, MA 02118, 617-414-1416, dallen@bu.edu and Carol Pryor, MPH, The Access Project, 89 South St., Suite 404, Boston, MA 02111.

The Catalyst Center, a national center on financing and insurance for children and youth with special health care needs, is currently embarking on a project to assess the scope, causes and consequences of medical debt and related financial hardship among families raising children with special health care needs. Previous research on medical debt indicates that individuals with disabilities bear a heavy burden of debt. Findings of the National Children with Special Health Care Needs Survey and other studies indicate that financial hardship is a common experience of families with children who need health and related services beyond what is typical. What has not been known up to now, however, is the scale of financial hardship faced by families caring for a child with special health care needs, what the specific causes of debt and financial hardship are, and what the consequences of absorbing costs associated with a child's care are for families.

This presentation will report on an ongoing study of medical debt and related financial hardships for families of children and youth with special health care needs. Data presented will include findings from a national “town hall” phone meeting of families, five in-depth family case studies, focus groups held among families in different states to assess specific causes and outcomes of financial burdens, and an analysis combining data from the National Survey of Children with Special Health Care Needs and a study of state financing policies to identify state policies that influence family financial burden.

Learning Objectives:

• 1.To clarify the frequency and scale of financial problems related to cost of care among families of children with special health care needs;
• 2.To identify which types of costs among the range of expenses associated with children’s special health care needs are associated with family debt and hardship;
• 3.To document the impact of financial burden on families;
• 4.To identify state attributes that may contribute to or avert medical debt for families of children with special health care needs; and
• 5.To introduce listeners to a set of policy options that are now in place in particular states and that might be replicated by other states to avert debt and financial hardship among families of children and youth with special health care needs

Keywords: Children With Special Needs, Financing

Related Web page: www.accessproject.org;

Presenting author's disclosure statement:

Any relevant financial relationships? No

Recorded presentation