Paid parent caregivers are fundamentally the primary support system for individuals with disabilities in a world that often disregards the immense challenges these families face. Beyond managing their own daily needs, parents must advocate for essential services, medical care, and behavioral interventions to help their child achieve a level of independence, if possible. The burden of deciding whether to prioritize their child's care or the financial well-being of the entire family should not be an issue that parents must face.

Many parents have been forced out of the workforce through no fault of their own, as balancing a full-time job with the demands of round-the-clock care for a disabled child is nearly impossible. Often, these children require continuous supervision and care, which is further complicated in single-parent households due to high divorce rates among parents of children with intellectual or developmental disabilities. Recently, the Surgeon General highlighted the critical stress levels faced by these parents, which only intensify when they must juggle caregiving with a full-time job.

In dual-parent households, the choice often falls on one parent to forgo income to provide care, leading to a significant reduction in family income. The current compensation for Personal Care Assistants (PCAs) is insufficient, offering inadequate pay and minimal benefits, making it extraordinarily difficult to recruit and retain capable caregivers.

Before the General Assembly enacted legislation allowing LRIs to be permanently compensated as PCAs for their disabled children, families were compelled to publicly disclose sensitive and private information about their child's needs in an effort to prove they were providers of last resort. This practice, which often involved sharing distressing details on social media, was deeply troubling and raised concerns about privacy violations under HIPAA. Parents faced undue scrutiny and criticism, and the public disclosure often led to negative and insulting reactions from potential applicants.

It is imperative that LRIs and parents be guaranteed the right to permanent compensation as paid caregivers for their disabled children. This recognition will not only alleviate the financial and emotional burden on families but also ensure that the individuals who know and care for their children best are supported as they deserve. The current practices and limitations must be reevaluated and revised to reflect the true value and necessity of parental caregiving.