Health Care Reform and Children and Youth with Special Health Care Needs: Coverage Is Not Enough (July, 2009)
Printable version (PDF)One in five American families cares for a child or youth who has special health care needs1. Although 96% of these children have some form of health insurance, for about a third of families this health care coverage is not adequate to meet their child’s needs2. Since insurance benefits are typically designed to address acute episodes, they do not sustain families through the longer-term needs a disability or chronic illness produces. Families thus reach into their own pocket to pay for services their child needs. As a result, financial hardship is common among families of children with special needs, regardless of family income. Any national health reform proposal that is passed must include provisions that prevent families from suffering the serious financial hardship that results from caring for their child with special health care needs.
Some currently circulating health reform proposals contain elements that will offer protection for families, such as:
- guaranteed issue;
- exclusions for pre-existing conditions;
- limits on out of pocket expenditures;
- prohibitions against lifetime benefit caps;
- sliding premium scales to promote affordability;
- use of health care quality improvements and the medical home model;
- coverage for flexible benefits and care provided at home; and,
- supportive services provided in the community
To protect family financial security, effective reform strategies must go beyond providing minimal coverage for all Americans. Meaningful reform must encompass access to comprehensive coverage that includes the range of benefits children with special health care needs require as well as strategies that provide for family supports.
Fortunately health reformers can draw on existing state level best practices to inform key program design decisions. These programs and ideas can be found on the Catalyst Center website (www.catalystctr.org). For example, the Massachusetts Commonhealth program allows families of children with severe special health care needs to purchase wrap around coverage through the Medicaid program on a sliding fee scale; Louisiana and North Dakota have implemented a different type of Medicaid buy-in program through the Family Opportunity Act. 3 Other states have developed programs that offer families flexible funding to purchase needed services even if they are outside available coverage options.
We urge architects of health reform to use Catalyst Center resources and contact us for further clarification of strategies that can be used to provide meaningful health care coverage that promotes family financial security and thus maximum participation in employment, education and social activities.
1 The Maternal and Child Health Bureau defines children and youth with special health care needs as: “…those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.”
2 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 30, 2009 from www.cshcndata.org.
3 For more information, see the Catalyst Center publication Frequently Asked Questions About the Family Opportunity Act’s Medicaid Buy-in Option (February, 2008) at www.catalystctr.org
