POST 7 — When the Equipment Exists, but the Support Doesn’t
WHEN COMPLEXITY MEETS THE STANDARDIZED BOX Educational Series — Posts 6–10 POST 7 — When the Equipment Exists, but the Support Doesn’t Life-sustaining technology | Funding | Community living What good is life-sustaining technology if the supplies required to operate it aren’t funded? In January 2009, my son Alex received an implanted NeuRx Diaphragm Pacing System. At the time, he was the youngest child to receive the system. Today, that diaphragm pacer remains his primary respiratory support. His ventilator provides additional assistance. The distinction matters. The pacer is not simply an optional accessory. It is essential to his respiratory function. But here’s something that may surprise people. The supplies necessary to operate and maintain his diaphragm-pacing system are not covered through the funding arrangements currently available to us. Batteries. Wires. Specialized skin holders and bandages. We purchase them ourselves. Now consider another part of Alex’s respiratory ...
