Remaining as the first option as the LRI is critical because my intimate knowledge of my child’s rare genetic disorder ensures that every medical decision is made with precision and expertise. Any amendment that alters this priority would expose my child to caregivers lacking specialized knowledge, leading to potentially fatal mistakes.

My child has a rare genetic disorder that requires 24/7 medical supervision and precise care. I have become an expert in managing their condition, from administering complex medication regimens to responding to frequent medical crises. Introducing a new caregiver unfamiliar with the nuances of this disorder could result in delayed or incorrect interventions, putting my child's life at risk. I should remain the primary caregiver to ensure that my child receives the expert care they need to survive. The provisions of HB909/SB488 have been crucial in allowing me to continue providing this lifesaving care. The Virginia General Assembly’s support has ensured that my child’s complex medical needs are met without compromise. Amending these provisions could lead to inadequate care, severely endangering my child's life. The current waiver draft could force us to rely on caregivers who might not have the specialized knowledge necessary to manage such a rare condition, increasing the risk of life-threatening complications.