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.
Parents of children who are dependent on technology in this manner earnestly desire that their child grows and develops as close to the normal pattern as possible. Children develop psychologically, neurologically, and socially throughout childhood. This growth may not be possible in acute care hospitals, where there is not an emphasis on non-medical care, and parents may not have the resources to care for their children at home, though some do. They need an environment that offers normal childhood developmental and social opportunities in order to achieve their maximum development and quality of life.
Pediatric subacute facilities developed and evolved to meet the technological and developmental needs of these children. One pediatric subacute facility, Totally Kids Specialty Healthcare, has been identified as having 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:
1) The ability of the pediatric subacute provider to safely fuse together the clinical and developmental aspects of care, and
2) How well community support services interconnect.
A seamless continuum of care ranging from home, to the subacute facility, to the acute hospital can be developed to support children with complex medical needs and their families. New or augmented programs in the areas of respite care, information and referral, workshops, support groups, and research should be targeted. Furthermore, legislation may be required 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, regardless of residence, and to define the unmet needs of these children. The Regional Center system has as its goal identifying and serving children with development disabilities. There is no comparable system to identify and serve children with technology dependence who are not developmentally disabled. We believe there is similarity to the needs of families in these two realms and that the families would profit from regular interaction and education.
It is our goal at Kids 4 Ever to provide education and support to parents of technology dependent children through our connections with the various providers of quality services: Critical Care Units, Ventilator-dependent clinics, Home Health Agencies, Pediatric Subacute Facilities, and Family and Community Support Agencies. Information and training for parents about how these services can interconnect with Inland Regional Center provides an outstanding basis for quarterly workshops in San Bernardino and Riverside Counties. A system can be formed that supports all technology dependent children based on their degree of technology dependence and their needs for growth and development.