Financial and employment burden among US families with visually impaired children with special health care needs

Based on 2009-2010 data, over 1.7 million US children with special health care needs (CSHCN) are visually impaired (defined as having any difficulty seeing even when wearing glasses or contact lenses). Very little is known about the financial and employment impact of health care needs among families with visually impaired CSHCN, as prior research focused on all CSHCN or other subgroups. We used data from the 2009-2010 SLAITS National Survey of CSHCN, funded by the Maternal and Child Health Bureau and conducted by the National Center for Health Statistics, to derive national population-based estimates that describe the impact on families. Families of visually impaired CSHCN face considerable financial burden and employment obstacles due to their child's health care needs. Compared to CSHCN with no difficulty seeing, visually impaired CSHCN live in families that were significantly more likely to experience financial problems (19.5%, 32% respectively), spend ≥11 hours per week providing or coordinating health care (10.8%, 21.3%), and have family members who cut back and/or stopped working (23.0%, 35.6%) because of the child's health care needs. Among CSHCN with health insurance, those with visual impairments were also more likely to have family members who stayed in jobs to maintain health insurance (23.0%, 16.7%). No difference was noted in the percentage of CSHCN whose families paid more than $1,000 per year in out-of-pocket costs for their child's medical expenses. To identify characteristics associated with the increased family burden, we will present risk ratios for socioeconomic and demographic factors, and selected health indicators.