‘Godsend’ caregiver program for Virginians with disabilities set to end this fall

Young, in love and ready to take on the world together, former U.S. Army sergeant Shane Phillips and Emily Siddens tied the knot in 2000 – unaware that a year later, a severe brain injury resulting from a car accident would leave Emily bedridden and completely dependent on others for day-to-day living.

For the past 22 years, Phillips has been struggling to care for his wife. He left the army and lived off savings while looking for a home care worker for Emily who wasn’t a “nightmare.” After years of searching, he found one and returned to full-time work, but still remains his wife’s primary caregiver due to the challenges of her condition. The overwhelming stress of it all finally caught up to him last year, landing him in the emergency room six times.

“I think I’ve been treading water while holding her head above water for 22 years, making no progress, with no hope or light at the end of the tunnel,” he said.

Ironically, the COVID-19 pandemic provided some relief: New rules linked to the federal public health emergency meant he could get paid by Virginia for being his wife’s caregiver — an arrangement Virginia approved this March.

“When I finally got the option to be her paid caregiver, it’s like I could breathe,” Phillips said. “Maybe things were gonna be okay, and maybe we could actually get back to some decent quality of life again, which we haven’t had since she was 19, since I was 21.”

However, a recent decision by the Department of Medical Assistance Services, which oversees the state’s Medicaid program, means this option is set to expire this November – despite state law allowing it to become permanent.