Remaining as the First Option for LRI: Remaining as the first option for the LRI is critical because, as parents, we know our children's needs better than anyone else. Our familiarity with their medical and emotional conditions ensures that the care we provide is medically appropriate and sensitive to their unique challenges. We have a trusted parent as the paid aide/attendant, who gives the child continuity in care, especially in distress or medical emergencies. Any amendment that changes this structure would disrupt the child’s care, leading to potential harm, loss of trust, and significant regression in their progress. I strongly oppose any changes or amendments in the Application for 1915(c) HCBS Waiver: Draft VA.004.05.03 that reduce the role of the LRI as the primary caregiver.

The presence of a parent as the LRI ensures consistency in care, which is vital for children with disabilities who require stability. Having external caregivers can create anxiety, confusion, and even trauma in children, especially those who are non-verbal or have communication difficulties. The expertise and understanding parents bring is not just valuable, it is irreplaceable. It cannot be substituted by documentation or third-party caregivers. The current system is designed to protect our children, and any changes undermining the parent's role would put these vulnerable children at greater risk. The last thing families like mine need is to reintroduce a system that fails to recognize the importance of keeping parents as the first option for their child’s care.