My child has a rare neurological disorder that manifests in severe, unpredictable muscle spasms and requires constant management to prevent debilitating pain and injury. I have developed a nuanced understanding of my child’s triggers and early warning signs, enabling me to intervene before the spasms escalate. Having an unfamiliar caregiver step into this role, without the same level of insight or experience, could result in inadequate management and significant suffering for my child. The protections provided by HB909/SB488 are crucial in ensuring that I remain the primary caregiver, as my deep familiarity with my child’s condition is essential for their well-being. Should these protections be altered, my child could face unnecessary pain and potential harm at the hands of less experienced caregivers. In the past, I have been subjected to the exhausting ordeal of submitting The Objective Written Documentation Form, a process that demanded an inordinate amount of detailed evidence to justify my role as the LRI. This included compiling extensive medical records, daily care logs, and expert evaluations, all while managing the day-to-day challenges of my child’s condition. The process was grueling, with each submission often met with requests for further documentation or clarification, stretching an already burdensome task into an ongoing saga. The emotional toll of having to repeatedly justify my capability and the necessity of my involvement was immense, leaving me drained and anxious. The thought of being forced to undergo this bureaucratic nightmare again, under the proposed waiver changes, is deeply distressing, as it would undoubtedly divert my focus away from my child’s critical care.