I firmly oppose the Application for 1915(c) HCBS Waiver: Draft VA.004.05.03 03 section that focuses on finalizing/amending the rules set by HB909/SB488 when an (LRI) is the paid aide/attendant for the personal care service as it endangers the lives of children with severe cardiac conditions by threatening the essential protections currently in place.

My child’s severe cardiac condition necessitates daily monitoring of their heart function using specialized equipment such as a pacemaker and defibrillator, devices that require precise interpretation and immediate action in case of irregularities. I have become deeply familiar with the intricacies of these devices. I can detect subtle changes that may indicate an impending cardiac emergency, allowing me to act swiftly to prevent disaster. Handing this responsibility to a caregiver lacking the necessary expertise is an intolerable risk that I am unwilling to take. I must remain the primary caregiver to ensure that my child’s heart condition is managed with the highest level of vigilance and care. The current regulations under HB909/SB488 have wisely acknowledged the critical importance of my role as an LRI, ensuring that my expertise is prioritized in my child’s care. Any amendments that diminish this role would be a perilous mistake, potentially leading to fatal cardiac events due to the inexperience of less qualified caregivers.