with serious emotional disturbance, with an emphasis on case management, care coordination, individualized treatment plans, and active involvement of family members and other caregivers (IOM, 1997a). Block grant funds are often used to help states organize and coordinate these services.
Although these principles of case management and coordination have been used to develop children's mental health programs in many states, the programs have rarely been evaluated, and data on the implementation and success of the programs have not been collected. Still, this approach may provide a model for comprehensive approaches that could also be applied to other children with special health care needs.
The Personal Responsibility and Work Opportunity Reconciliation Act of 1996 defines disability as a physical or mental condition or conditions that can be medically proven and that result in marked and severe functional limitations (SSA, 1997a). Children with developmental disabilities have chronic conditions that manifest as single physical, psychological, self-care, language, cognitive, or speech impairments or combinations of these conditions (e.g., cerebral palsy, spina bifida, hearing impairment, visual impairment, and mental retardation). Partly because of differences in definitions and range of severity, estimates of the prevalence of developmental disabilities among children vary from 3 to 17 percent (Boyle et al., 1994; Newacheck and Taylor, 1992).
Data from the National Health Interview Survey indicate that disabled children have 1.5 times more visits to physicians and 3.5 times more hospital days than other children. They miss twice as many school days and are 2.5 times more likely than children without these conditions to repeat a school grade (Boyle et al., 1994).
Children with developmental disabilities have unique and special needs. In addition to the usual health care needs, such as immunizations or care for acute respiratory infections, they often require the assistance of physicians and nonphysician specialists, such as nutritionists or physical therapists. For example, they may require specialized diets, surgical interventions, and specific therapies to prevent complications and to relieve or reduce symptoms.
Although children with disabling conditions may benefit from care provided by specialists in terms of improved health and longevity, several of the committee members believe that increased use of specialists and specialty services can lead to fragmentation of care unless there is an explicit treatment plan that designates responsibilities for care coordination among primary care providers, specialists, parents, and adjunctive practitioners. Care coordination decreases the likelihood of the need for crisis care, reduces duplication and gaps in services, and helps to increase the likelihood that a child will be referred for appropriate medical and adjunctive services to maintain as high a level of independent functioning as possible.
Although there are many different definitions of children's disabling or chronic conditions, for the purposes of this discussion the committee believes that special health care needs fall into distinct subgroups. The first includes children with severe conditions that are initially costly but whose use of resources decreases over time (e.g., infants with congenital heart defects requiring surgery or premature infants requiring neonatal intensive care). The second group includes chronically ill children who need repeated episodes of care throughout life to maintain or improve functioning, including those with asthma, diabetes, malignancies, sickle cell disease, cystic fibrosis, and neurodevelopmental disabilities such as cerebral palsy, and visual and hearing impairment.
Naturally, children's health care and medical needs—and thus their medical expenses—vary by the diagnosis and the severity of their illnesses. The prospects for medical improvement and improved