My child battles a severe gastrointestinal disorder that necessitates precise management of their nutrition through a feeding tube. Over time, I have mastered the intricacies of administering their feedings, monitoring for signs of distress, and making real-time adjustments to prevent complications like aspiration or bowel obstruction.

The possibility of entrusting this highly specialized care to an outsider, who may not fully comprehend the delicate balance required, is deeply unsettling. The current rules under HB909/SB488 rightly prioritize my involvement as an LRI, acknowledging the critical nature of my expertise. If these rules are amended, it could jeopardize my child by allowing inadequately trained caregivers to assume responsibilities beyond their scope.

In the past, I have had to endure the grueling process of submitting exhaustive supporting documentation for The Objective Written Documentation Form, spending countless hours gathering medical records, care logs, and specialist letters just to prove that my role as the primary caregiver was indispensable. The form demanded an overwhelming amount of detail, requiring me to justify every aspect of my child’s care with objective evidence, which was both time-consuming and emotionally draining.

Despite these efforts, the process felt like an endless loop of paperwork and appeals, where every piece of documentation was scrutinized almost unreasonably. The stress and frustration of this process were compounded by the fear that any misstep could result in a loss of critical support. Repeating this exhausting process under the proposed waiver amendments would not only be burdensome but could also jeopardize my ability to continue providing the life-sustaining care my child depends on.

The current regulations under HB909/SB488 that do not require OWD to be continuous must remain.