Providing optimal care for a disabled child often falls to family members due to their deep understanding of the child’s specific needs and the continuity they offer. In cases like mine, where my child has an intellectual disability coupled with physical limitations, my role as the primary caregiver is indispensable.

The importance of maintaining family members in caregiving roles is underscored by my personal experience. Despite the promise of additional help through a DD waiver, the reality has been challenging. Finding qualified, reliable caregivers has been nearly impossible not to mention the low pay of $13/hr. The frustration of inadequate support has been significant.

The proposed changes to the 1915(c) HCBS Waiver and the regulations around Legal Responsible Individuals (LRIs) threaten this stability. They introduce barriers that undermine the ability of family members to provide essential, personalized care. Reverting to outdated requirements and additional administrative hurdles could delay care, increase stress, and jeopardize the health of those relying on these services.

It is crucial to support amendments that allow families to continue as primary caregivers, recognizing the unique and expert care they provide. Flexibility in these regulations is essential to ensure that families can thrive and provide the best support for their loved ones, rather than struggling with unnecessary obstacles.