Abstract: The purposes of this study were to: (1) describe both the urban and rural clients who received services from the Indiana Children with Special Health Care Needs program (CSHCN) including both demographic and clinical characteristics; (2) conduct a health care needs assessment of the CSHCN program clients in both urban and rural areas; and (3) measure the perceived quality and adequacy of the CSHCN program services.
A survey instrument was developed and mailed to all 6,459 families who participated in the Indiana CSHCN program from July 1,1990 to June 30,1992. Of the 2,722 questionnaires used in the analysis, 1,624 clients (59.7%) resided in urban counties and 2,098 (40.3%) resided in rural counties.
The most frequently noted conditions for program eligibility were asthma, ear infections, hearing impairments, heart defects, and convulsions and seizures. Asthma had greater prevalence among the urban clients while cleft lip/palate, epilepsy, and heart defects were more common among the rural clients.
The majority of program clients perceived their medical needs as being met. However, significant numbers of clients perceived unmet needs for mental health services, support groups, information about community services, resources to pay for uncovered medical expenses, and respite care. Of the 23 listed services, five were reported at significantly lower rates by rural clients as not being met: regular medical care, recreation, child care/day care, parent support group services, and speech therapy.
Quality of medical services was generally perceived as being “excellent or good,” while services related to information about community programs, child's rights in school, resources available to pay for uncovered medical expenses, as well as communication between the treatment center and the child's school were more often rated as “fair or poor.” A smaller proportion of rural clients rated physician care and availability of staff nurses as fair or poor. A larger percentage of the rural group reported that access to treatment center location was fair or poor, compared to the urban group.
Overall, the evaluation of the Indiana CSHCN program has shown that the non-medical care component seems to be in need of change, especially in the area of information and communication. Attention needs to be focused on providing more family support such as respite or child care and support groups, better information and communications, and improved availability of mental health services to better enable the CSHCN program to meet its objectives.