Due to advances in medical care, a population of children with long-term reliance on technology has developed. This is due to advances in care in pediatric emergency medicine and pediatric and neonatal intensive care. Some of these children live only because of advanced technology such as nutrition through the veins or a mechanical ventilator for breathing. Their reliance may be to such an extent that destabilization leads to death without early and effective intervention.
Children who are dependent on this technology have the same need for growth and development as those without technology-dependence. Parents desire and anticipate natural development in their children biologically, psychologically, and socially throughout childhood, regardless of special needs. This growth may be difficult in acute care hospitals where there is greater focus on medical treatment and less focus on long term development. Children need an environment that offers normal childhood development and social opportunities to achieve their maximum development and improve their quality of life
Pediatric subacute facilities developed and evolved to meet the technological and developmental needs of these children. One pediatric subacute facility has expanded the involvement of medical staff by bringing in more physician and nurse practitioner services and a wider range of specialists. Of equal importance has been the facility’s strengthening of family support and developmental programs, including an in-house public school, a child development program, and a successful volunteer program, all of which can be duplicated. The increasing number of technology dependent children and their special needs are driving this development. The children now referred to pediatric subacute programs have an extreme dependence on technology or have severe social issues that complicate or interfere with the child’s return to the home.
Maximal success for these children, therefore, depends on: the ability of the pediatric subacute provider to safely fuse together the clinical and developmental aspects of care; and how well community support services interconnect.
A seamless continuum of care between home, subacute facility, and acute hospital can be developed that will support children with complex medical needs and their families. New or augmented programs in the areas of respite care, information and referral services, support groups, and research should be targeted. Furthermore, legislation may be needed to develop new services or coordinate existing services .
In order to develop this continuum, there is a need to identify the number of children with technology dependency in the State of California and to define the unmet needs of these children. The Regional Center system (under contract with the State of California to case manage all developmentally disabled citizens) does an excellent job identifying children with development disabilities. However, there is no comparable system to identify and serve children with technology dependence but not developmentally disabled.
Access to this system of care and support should be guided by the child’s dependence on technology. We can assist the State of California in developing a system that supports all technology dependent children based on their degree of technology dependence and their needs for growth and development.