In 1987, the former US Office of Technology Assistance defined the medically fragile, technology-dependent child as “one who needs both a medical device to compensate for the loss of a vital body function and substantial ongoing nursing care to avert death or further disability.” The continued growth of medical knowledge and technology over the years has led to an increase in the number of children with medical complexity (CMC) who, through the use of technological assistance, live longer and at home, yet still have frequent hospital admissions. While no newer standard definition of medical complexity and fragility has been established, a number of definitions exist with the most common unifying theme being a reliance on medical technology devices, such as the use of a tracheostomy, mechanical ventilation, an enteral feeding tube, or a vascular access device. Some have incorporated the use of assistive devices associated with communication or mobility impairments into the definition of technology assistance. In this chapter, we will review select technology devices and supports, examine the role of specialized therapists to address functionality, and discuss assistive devices and home modifications needed to improve the child’s mobility, transportation, and activities of daily living. Educational and communication devices are beyond the scope of this chapter due to their complexity and rapid change (see Chapter 89).
ASSESSING TECHNOLOGY NEEDS
A child’s diagnosis and prognosis should guide the shared decision-making process between the family and the care team about whether to pursue the use of certain medical technologies. The child’s family is integral to deciding whether a particular technology support is consistent with their overall goals for their child. Simply because a particular intervention or technology is available rarely means it must be performed or acquired, especially if it will not significantly alter the course of a child’s ability to meet a goal.
If assistive technology is desired, the choice of support or device requires input from the family and multiple members of the coordination team. The primary care physician and tertiary center program providing care coordination must be able to advise the family on the potential benefits and possible limitations of a certain technology support, particularly if they have specialized expertise (eg, a tracheostomy and ventilator program). Frequently, input from other specialists, therapists, teachers, technology vendors, durable medical equipment companies, and insurers is required to ensure that the technology is appropriate. When assistive technology devices are first placed or revised in the hospital setting, case management should be involved to review and coordinate appropriate home health services for the family.
All technology should maximize the child’s participation in developmentally appropriate physical, cognitive, adaptive, and social activities. Thus, it is important to consider child-centered factors (eg, size; growth; anticipated medical, physical, and developmental needs; play) when deciding on the type of support. It is also critical to consider caregiver factors (physical and cognitive) and the environment in ...