What do Children with Special Health Care Needs Require from Health Care Reform? (July, 2009)
Printable version (PDF)As we move to reform our healthcare system we need to keep in mind the unique needs of the over ten million children in the United States who have special health care needs. These children require “health and related services of a type or amount beyond that required by children generally.1” Health care reform, especially universal and continuous insurance coverage, is essential for these children who by definition need and use the vast majority of health care services among children. Other essential components of health care reform for children with special health care needs (CSHCN) include:
1. ADEQUATE coverage. Nearly one third of CSHCN have health insurance that does not meet their needs due to benefit limits (e.g. lack of coverage, dollar limits or visit limits), exclusions for pre-existing conditions or limited access to health care providers. Most of these children live in families with private insurance coverage. Mechanisms exist for some privately insured CSHCN to “buy into” Medicaid coverage to supplement their private coverage. This safety net option – or something similar – must be part of health care reform and include families at all income levels who can purchase the coverage on a sliding scale.
2. AFFORDABLE coverage. More than half of all bankruptcies in the United States are the result of medical debt or lost employment due to illness2. Visit and medication co-payments mount quickly for children with chronic health conditions, and many plans have lifetime benefit caps. Families of CSHCN need health policies that protect them from runaway out-of-pocket health care expenses to avoid financial hardship.
3. CONTINUOUS coverage. A 2005 national survey indicated that over 900,000 CSHCN were uninsured at some point in the year in which the survey was administered3. About 1/3 of these children had no insurance at all during the year and the other 2/3 experienced gaps in coverage during the year. These are children who cannot afford to go one week or one month without health care coverage. Health care reform must offer a safety net for children whose coverage is dropped due to changes in family employment or income.
For more in-depth information and analysis, see the following Catalyst Center publications
- Breaking the Link Between Special Health Care Needs and Financial Hardship
- Reducing Underinsurance for Children and Youth with Special Health Care Needs Through Medicaid Buy-in Programs
- Frequently Asked Questions about the Family Opportunity Act’s Medicaid Buy-in Option
1 McPherson M, Arango P, Fox H, Lauver C, McManus M, Newacheck P, Perrin J, Shonkoff J, Strickland F (1998). A new definition of children with special health care needs. Pediatrics 102:137-140.
2 Himmelstein D, Thorne D, Warren E, Woolhandler S (2009). Medical bankruptcy in the United States, 2007: Results of a national study. American Journal of Medicine. In Press.
3 National Survey of Children with Special Health Care Needs. NS-CSHCN 2005/06. Data query from the Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health website. Retrieved June 20, 2009 from www.cshcndata.org.
