uninsured children were eligible for Medicaid or SCHIP, but their parents or guardians had not enrolled them (Broaddus and Ku, 2000; Dubay et al., 2002a). Approximately two-thirds of the eligible but uninsured children were eligible for Medicaid and the other third for SCHIP. Among children identified as eligible for Medicaid, participation in the program ranges from a high of 93 percent in Massachusetts to a low of 59 percent in Texas (Dubay et al., 2002b; see also HCFA/CMS, 2000g). For children with serious medical problems, hospital social workers or other health care personnel often assist low-income families in enrolling the child in Medicaid, SCHIP, or any other special programs. A recent survey indicated that from 1997 to 2001 the number of uninsured children (under age 18) dropped from 12.1 percent to 9.2 percent while the percentage of children reported to have difficulty getting care dropped from 6.3 to 5.1 percent during this period (Strunk and Cunningham, 2002).
Lack of insurance does not necessarily mean the lack of access to all health care, especially for children with life-threatening medical conditions. Uninsured children may have some care paid for or provided by their families, “safety-net providers,” philanthropy, and other sources, but they may also go without needed services. Improved financing of care is one cornerstone of improved access to care for children, including children and families living with life-threatening medical conditions (IOM, 1998; Lambrew, 2001).
When children are insured and parents are not, children may still suffer. For example, some research suggests that insured children are less likely to have preventive care if their parents are uninsured (Gifford et al., 2001). As a result, some federal and state insurance initiatives are also reaching out to parents. For example, states can apply for waivers of SCHIP or Medicaid requirements to cover parents directly or through subsidies for enrollment in employer-based plans (AHSRHP, 2001).
Coverage of end-of-life and palliative care services for children who die and their families varies tremendously, both across payer types (e.g., private insurance, Medicaid) and among payers of the same type. Regional variation in coverage policies and their day-to-day interpretation is substantial, as is variation by size and other characteristics of employers. Moving across a state border or changing jobs can result in substantial changes in services covered for seriously ill children and their families.
The next sections of this report review what is known about how three