CONCLUSIONS

Identifying CSHCN is a challenge. From a public health perspective, it is often beneficial to broadly classify CSHCN so that the number of children at risk may be estimated and resources appropriately allocated for program planning. On the other hand, specific programs designed to treat CSHCN, such as the Iowa Child Health Specialty Clinics, may need to more narrowly define CSHCN to prioritize limited resources and serve those most in need. It is our belief that the FACCT CSHCN screener, used to identify CSHCN in the 2000 Iowa Child and Family Household Health Survey, broadly defines children with special needs, which is appropriate for this type of statewide analysis. An estimated 127,000 children in Iowa identified as having a special health care need from this study.

Children with special health care needs in Iowa were found to have a lower health status and more physical and behavioral/emotional limitations, as would be expected with a special needs population. While they were as likely to have a regular source of medical care as other children, CSHCN were more likely to need and have unmet needs for medical and specialty care. Allergies/asthma and behavioral/emotional problems were the most common chronic conditions of CSHCN. Although CSHCN were more likely to have health insurance, they were more likely to rate this health insurance lower. They were also more likely to have been without health insurance at some point in the past year, and more likely to receive public health insurance (i.e., Medicaid). CSHCN had more physician visits and more visits to an ER. They were also more likely, however, to have had a preventive visit and to have received anticipatory guidance (i.e., preventive counseling).

Compared to other children in Iowa, parents of CSHCN rated school performance lower and had lower expectations for their child's advancement. On the other hand, CSHCN were equally likely to be involved in extracurricular activities.

The parents of CSHCN were less satisfied with theirmarital relationships. CSHCN were also more likely to be in households where substance use was a problem. Further study is needed to determine if and how families of CSHCN could benefit from programs that help address issues in the family environment.

Further research and investigation is needed to determine how best to improve the access to care for CSHCN in Iowa and how best to identify CSHCN at the local level. Some difficulties in accessing services, especially specialized services such as genetic counseling and care coordination, may require more education about services that are already available in an area. Other barriers to care may require a more creative solution to get services to a low-volume area of need.