RICHMOND, Va. (WRIC) — For years, the families of disabled Virginians have been paid to take full-time care of their loved ones. An obscure new regulation could make that more difficult, and home caretakers are speaking out.

Yolanda Ross’s son was diagnosed with muscular dystrophy when he was just 8 years old. Ever since then, she’s been his primary caretaker — a task she wouldn’t entrust to anybody else.

“You don’t want just anybody coming in your home,” she said.

Since her son turned 19 and became eligible for Medicaid, she’s been paid for that tireless work under a “Medicaid waiver.” It’s a program that allows her to get paid the equivalent of what a home care attendant would get to take care of her son.

Changing the Rules

That could become more difficult soon under rules proposed by the Virginia Department of Medical Assistance Services (VDMAS), a little-known state agency that regulates home care and administers the federal money that supports family waivers.

Under current guidelines, “legally responsible individuals” — usually family members — can be paid for care “above what they would be obligated to provide.” In other words, family members who provide full-time care can act as the primary caregiver and be paid as such under Medicaid.

But as the public health emergency caused by COVID-19 comes to an end, VDMAS is imposing new requirements that would restrict how and when family members can be paid as primary caregivers.

One of those new requirements is that families provide proof that there are “no service/provider alternatives” available. Another would require that family caregivers have their care periodically reviewed “by a licensed enrolled/credentialed personal care agency” — in other words, a private caregiving company.

In supporting documents, agency personnel argued the new restrictions were necessary to “ensure that the plan of care/plan for supports is monitored adequately.”

Raising Concerns

Tonya Milling is the Executive Director of The Arc of Virginia, a group that promotes self-advocacy for people with developmental disabilities, and she told 8News that the rule change was part of a wide-ranging — and mandatory — update to the state’s Medicaid waiver system.

“The application itself is 330 pages plus,” she said.

The federal government gave states a lot of latitude during the COVID-19 public health emergency, but now, Milling says, “they have to create a structure.”

She said the current proposal — which is still open for public comment until March 30 — “doesn’t take away the ability to do this,” but she did say it could make it more difficult for some families.

“We too are concerned for what the impact might be on families, and are reviewing it to understand those impacts,” she said.

The board that oversees those proposed changes has already received 147 comments from Virginia residents, the vast majority of them in opposition to restricting family caregivers.

“We are (as parents and spouses) the on-call, 24-7 cooks, attendants, nurses, etc,” wrote Dee Green. “Why create chaos and burden to these agencies by saying if a spouse or parent want to be the caregiver (if this goes through) they must be an employee of an agency?”

Still, Milling said, “We’re feeling optimistic that a resolution can be found on any issues.”

“They’re doing it out of love”

For the families who do receive a waiver, the pay is often slim, and Ross said that doesn’t make it easy to recruit reliable workers to care agencies.

“We make 17 cents above minimum wage. You have children at the local Burger King making more than that,” Ross said. “It’s hard to find quality people to do low-wage work.”

That’s why she elected to take care of her son herself — something made possible by the waiver.

Charles Carter is a lifelong resident of southside Virginia, and for 3 years, he was the primary caretaker for his wife.

“I got involved in home care in 2003,” he told 8News. His wife developed brain and heart issues after experiencing complications from a tooth abscess. These complications required intensive care.

But at the time, Carter didn’t receive a home care waiver.

“I was not paid for it,” he said. “We almost lost everything, including our home. One of our children had to give us a car to help us get around.”

He said even if he had known about the waivers, some families wait years for their applications to be improved. Carter’s wife passed away in 2006 from heart complications.

“People who do home care work, they’re not doing this for money. They’re doing it out of love,” he said. “I had to quit my job to take care of her, but I did it because I love her.”

Still, he said, the workers who provide these vital services need “to have a roof over their heads.”

Now, Carter is a member of SEIU 512, the union representing home care workers in Virginia.

Carter said that in addition to rejecting the proposed rule changes, the board needs to expand the availability of waivers overall to reduce waiting times.

Ross also said that the pay allocated under Medicaid was not enough to fully support necessary home care.

“The income is truly not a living wage in the current economy,” she said.

The VBMAS committee that oversees Medicaid was expected to hold a meeting to adopt the rule changes on March 30, but that meeting has since been canceled. It has not yet been rescheduled.