Magazine article The Exceptional Parent

Health Care Costs Continue When Children with Special Health Care Needs Become Adults

Magazine article The Exceptional Parent

Health Care Costs Continue When Children with Special Health Care Needs Become Adults

Article excerpt


The 2005-06 National Health Survey of Children with Special Health Care Needs reported that 13.9% of U.S. children have special health care needs and 21.8% of households with children included at least one child with a special health care need. (1) The children's special needs ranged from those rarely affected by their condition to those who are significantly limited in their abilities. Repeated reports in the profession and lay literature emphasize the emotional, social, physical, economic, and a seeming endless array of related factors which impact on the child, the family and the community.

Another national study concluded that, "Although many of these children appear to be receiving the services they need, our findings suggest that: 1) children in low-income families, 2) those in selected racial and ethnic minority groups, and 3) those without health insurance, experience disproportionate barriers to accessing care, have lower rates of access to care, and are less likely to be satisfied with the services they receive. Much of the underlying problem is that the health care service system for these children is highly fragmented." (2) Compared with other children, children with special health care needs (CSHCN) had three times higher health care costs. The CSHCN "... accounted for 42.1% of total medical care costs (excluding dental costs) and 33% of total care costs (including dental costs) attributed to children..." (2)

It turns out that across the U.S., among a large majority of special needs families, some 91%, are experiencing added financial burden for therapies, rehabilitation programs, specialty medical care, and other expenditures. The average extra cost per family came out to about $774 per year. However, those families living in wealthier states face lower average extra costs for caring for their children with special needs. The average family in Massachusetts pays $562 in out-of-pocket expenses every year, while the average family in Georgia pays $972. That's a lot of money considering that this survey took into account all children with special needs, including children who are mildly affected, while undercounting those with more severe problems. The range in the percent of families with out-of-pocket costs was from 86% in Michigan, to 94% in Mississippi. (3) Beyond child and family characteristics, there is considerable state-level variability in low-income family's out-of-pocket expenditures for the CSHCN. "A portion of the variability is associated with states' Medicaid and Child Health Insurance Program income-eligibly thresholds. Families living in states with more generous programs report less absolute and relative financial burden than families living in states with less generous benefits." (4)


The emphasis on particular support services for CSHCN is transformed as the children pass through the adolescent years into adulthood. Economics, education, social and health concerns and related issues remain. Now, however, (depending on the level of disabilities) the concerns of the earlier years are merged with added unease related to the possibility of employment and sufficient economic support, and the care and supervision of adults with special needs when parents, siblings and other usual care-givers are no longer available. It is critical to secure the advice of knowledgeable and experienced professionals during the transition from child to adult support programs (e.g. from coverage under the Child Health Insurance Program to the Medicaid and Medicare programs).


1) Adults with incomes below the poverty level in their particular state may be eligible for the Medicaid program.

2) Individuals with disabilities under 65 years may also be eligible for coverage under the Medicare program if they receive Social Security Disability Insurance (SSDI) benefits. …

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