Factors associated with ease of using community-based systems of care for CSHCN in Hawai'i

To study factors contributing to difficulty using community-based services by families of children with special health care needs (CSHCN) in Hawai'i.

Data source was the 2001 National Survey of Children With Special Health Care Needs. The study population included the 449 respondents who were surveyed after additional items were added to the original questionnaire. Outcome of interest was "% of CSHCN whose families report community-based service systems are organized so they can use them easily." Explanatory variables included child health conditions (functional limitation, degree of severity, types of service needs), child and family characteristics (child age, maternal education, poverty level), and health services characteristics (partnership of family in decision making, family-centered coordinated care, adequate health insurance).

Children with special health care needs comprised 11.0% of < 18 years old children. Overall, 69% of respondents reported that community-based services could be used easily. Logistic regression analysis showed that the odds of reporting difficulties in using community-based services were almost 5 times higher for families who did not partner in decision making, 2.9 times higher for families who did not receive family-centered coordinated care, and 2.7 times higher for families who did not have adequate health insurance compared with families who were satisfied with the care received. Need for services contributed independently to reporting difficulties in community-based service use. Contrary to the hypothesized associations, severe health conditions or limited functionality did not contribute significantly to reporting difficulties in service use.

Families who reported difficulties in using community-based services were those who have children who need extensive and varied services. Lack of involvement in decision making, lack of coordinated care in a medical home, and insufficient health insurance were the main obstacles to their ability to use community-based services easily.