Identifying children in need of ancillary and enabling services: a population approach

Children with chronic or disabling conditions use health, education and social services at a higher rate than their healthy peers. Estimates of the number of children in need of these specialized services are widely varied and often depend on categorical definitions that do not account for either the diversity or commonality of their experiences. Developing methods for identifying the population in need of services, particularly children likely to use long-term ancillary (audiology, occupational, physical or speech therapy, or social work) and/or enabling services (special equipment, personal care assistance, respite care, transportation, or environmental modifications), is essential for effective policy and program implementation. This study examines several recent attempts to operationalize definitions of children with chronic conditions using a noncategorical classification approach. Particular emphasis is placed on the subgroup of children identified as having functional limitations. Proposed operational definitions of children with functional limitations are compared using data from the 1994-1995 Disability Supplement to the US National Health Interview Survey. Estimates of the number of children reported to be using ancillary and enabling services are generated and compared across operational definitions of functional limitation as well as by the number, severity, and type (i.e. mobility, self-care, communication/sensory, social cognition/learning ability) of limitation. Depending on the operational definition selected, 9-14% of US community-dwelling children are estimated to have functional limitations. Among children with limitations, 26-30% regularly use ancillary services and 11-14% use enabling services. The strengths, limitations, and potential applications for each operational definition are discussed.