“Obviously there's a shortfall when you look at what the VA is providing for aid and attendance versus what the reality of 24-7 care costs."
Air Force Veteran Ed served his country for 19 years, first attending the Air Force Academy and then remaining in the Air Force for 15 more years. He had a family, loved his work, and was happy to dedicate his life to his country and “making a difference.”
After 15 years of service, Ed’s life was turned upside down by a catastrophic spinal cord injury he sustained on base and in the presence of his wife and child. Ed’s spinal cord and phrenic nerve were damaged. Instantly, he became an incomplete quadriplegic.
Ed’s wife was overwhelmed by the sudden, devastating change and the pressure of raising their daughter and caring for Ed. They soon split up, with Ed’s wife and child moving to Colorado, leaving Ed alone in Florida. Since then, Ed has had to coordinate his own around-the-clock care, which has proven both difficult and expensive.
“I've had some no-shows and no-call no-shows,” Ed said. “If I was left alone too long, well, I'd run out of water would be the first one. In a few hours, I would have some serious medical problems because I wouldn't be able to empty my bladder, and then I would run into issues with potential pressure wounds from not being able to get out of my chair.”
Without use of his arms, Ed requires assistance at all times of day, from getting up in the morning, to preparing and eating meals, to bowel care. Because caregivers require limited shifts and days off, Ed has worked hard to recruit and retain a full care team to ensure his safety throughout the week.
“You never know when you will need somebody, when something happens that will make you need someone right now,” Ed said. “And you can't hire a caregiver to be like, ‘All right, I need you here for four hours and then I don't need you for the next hour and a half. And then I need you for another two hours and then I don't need you for an hour and a half.’ Nobody's going to do that.”
Inflation and wage increases have raised wages for full-time caregivers in recent years. Ed typically pays his caregivers $18 per hour (slightly less than the average rate), which makes full-time care cost roughly $15,000 per month.
Ed’s retirement benefits include $7,500 designated for aid and attendance each month — just over half of the total cost. The Department of Veterans Affairs provides an additional $4,000 per month for his care. Ed occasionally receives funds from Veterans’ organizations, but often relies on his savings to make ends meet.
“Obviously there's a shortfall when you look at what the VA is providing for aid and attendance versus what the reality of 24-7 care costs,” Ed said. “I have some savings and investments from prior to my injury, and so that's how I'm able to function right now. It took a lot of time and effort to get all those things set up and squared away, and I know it's not something everybody can do.”
The Elizabeth Dole Home Care Act (H.R.542/S.141) aims to increase the expenditure cap for non-institutional care alternative programs from 65 percent to 100 percent of nursing home care costs. The bill would also require the Department of Veterans Affairs (VA) to establish agreements with outside providers to furnish medical and social services to veterans who are not in VA nursing homes.
Ed, who currently depends on the generosity of Veterans’ organizations to help pay for his care, hopes the bill will bring more support, stability and peace of mind to Veterans like himself who are struggling to survive due to rising costs and limited care options.
“I know I'm able to tread water right now by the grace of God, and with help from a lot of great organizations, but it's only there until it's not, right?” Ed said. “There are no real guarantees there.”