The proposed amendments to the CCC+ waiver regarding Legally Responsible Individuals (LRI) serving as paid aides or attendants for personal care services introduce significant challenges that undermine the caregiving system. While the stated goal may be to establish more explicit rules, the practical impact of requiring extensive supporting documentation imposes undue burdens on families already navigating complex care needs. These amendments fail to appreciate the realities caregivers face and, if implemented, could have far-reaching negative consequences for the vulnerable populations these policies are intended to support.

Consider, for example, the case of a mother caring for her non-verbal autistic child. Under the current system, she provides daily care through the CCC+ waiver, ensuring her child receives the specialized attention that only a dedicated and intimately knowledgeable caregiver can offer. Recently, she was forced to spend countless hours compiling medical records, therapist notes, and daily logs to justify her role as the most qualified caregiver for her child. This extensive documentation process detracted from her ability to focus on her child’s care, leading to missed therapies and escalating stress within the household. Despite submitting exhaustive paperwork, the result was months of delayed services—delays that directly impeded her child’s developmental progress, potentially causing long-term harm.

The proposed requirements for LRIs to submit this level of documentation fundamentally disregard the essential role that caregivers play. It assumes that caregivers must repeatedly prove their capability, even when they are demonstrably the most qualified individuals to care for their children. This bureaucratic burden, which includes compiling medical records, therapist notes, and daily logs, not only devalues their lived experience and expertise but also risks driving caregivers toward burnout. The administrative strain detracts from time that could be spent caring for their loved ones, introducing delays that could worsen outcomes for those with significant care needs.

Rejecting these amendments is not just a matter of opposing unnecessary red tape; it is about preserving the critical support systems that allow families to care for their children effectively and without bureaucratic encumbrance. LRIs are not merely an option—they are often the best solution for providing personalized, consistent care. The proposed changes, which would compel families to undergo repetitive and exhaustive documentation processes, serve only to create additional barriers to care, potentially making it even more difficult for families to access the services they need.

I strongly oppose the Application for the 1915(c) HCBS Waiver: Draft VA.004.05.03. This draft undermines the flexibility and security that families require to care for their children and threatens to disrupt the continuity of care by introducing needless administrative hurdles. I urge lawmakers to reconsider these harmful amendments and prioritize policies that respect the role of LRIs, ensuring that families can focus on what truly matters: the health and well-being of their children.