I am writing to fiercely oppose the tightening restrictions, administrative hurdles, and the 56-hour soft cap being imposed on parent and spouse paid caregivers under the Medicaid waivers.
For years, my family was kept completely in the dark about the fact that parents could be compensated for providing intensive, around-the-clock medical and personal care. The state failed in its duty to proactively inform eligible families about these programs. As a result, my family provided years of intensive, invisible labor that saved the Commonwealth of Virginia hundreds of thousands of dollars, while we shouldered the financial and emotional strain entirely alone.
Discovering years later that this support existed—only to find that the state is now actively trying to shrink the program, impose an arbitrary 56-hour cap, strip away respite care, and enforce rigid tracking like Electronic Visit Verification (EVV)—is a profound systemic betrayal.
Family caregivers do not work on an agency clock. Our care responds to the volatile, real-time medical and behavioral needs of our loved ones. Forcing families to navigate an adversarial system that treats parental care as a budget liability rather than an essential service is cruel and short-sighted.
I urge DMAS and Virginia lawmakers to:
Eliminate the arbitrary 56-hour cap for Legally Responsible Individuals.
Restore access to vital respite care hours for families who serve as paid providers.
Improve transparency so that no other family is left in the dark for years regarding the lifelines they are legally entitled to receive.
