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Virginia's Medicaid program pauses changes for parents acting as paid caregivers

Anchor Erin Miller explains why the regulations have been paused and what happens next
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VIRGINIA BEACH, Va. — The program that oversees Virginia Medicaid paused new regulations from going into place on March 1, 2024.

The decision impacts parents, otherwise referred to as Legally Responsible Individuals (LRIs), who, since the beginning of the pandemic, have been paid caretakers for their kids with severe developmental disabilities.

I first told you about this in February as advocates across the state were pushing to stop the changes. Now, I am following up as the Virginia Department of Medical Assistance Services (DMAS) received last-minute federal approval to extend some of the current processes.

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Problem Solvers

Parents paid to care for kids with disabilities set to see new rules in March

Erin Miller

“I think that families led the charge on this, you know, I was just happy to be alongside them,” says Senator Lashrecse Aird.

Senator Aird is feeling a slight sense of pride and relief, she says, as the General Assembly moves to make life easier for 1,700 families in Virginia.

Three bills, including SB 488 which she patroned, head to Governor Glenn Youngkin's desk after receiving approval from the House and Senate.

“The fact of the matter is families have been experiencing this current structure. They know what works, they know what hasn't worked and they have given us that feedback," she says. "We have a responsibility as a General Assembly to make this process easier.”

During the pandemic, Virginia allowed parents (LRIs) to be paid caretakers for a child with severe developmental disabilities.

Like many COVID-era programs, it was supposed to end but was extended. It was first set to end on Nov. 11, 2023, and then was extended again. The new deadline became March 1, 2024.

While an extension was given, advocates and legislators like Senator Aird said families needed more time. They also didn't agree with all the new regulations, so they pushed back.

“The new regulations that were set to go into effect on March 1 — they wanted those delayed until the General Assembly took action and actually directed [DMAS] for formal approval from the federal government [CMS],” Aird says.

As mentioned, DMAS ultimately paused the new rules. In a statement, they said the following, in part:

“In order to support the families who are navigating the changing policies around paid family caregivers, the Governor’s Administration and DMAS worked with CMS to take the extraordinary step of extending the implementation date of some of the new LRI policies pending any potential General Assembly action.”

To read the full statement, click on the link below.

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DMAS full statement on LRI policies

As outlined in Aird's bill, the rules include eliminating requirements that parents prove no one else can care for their child and removing limits on who the employer of record could be.

However, some changes have gone into effect. A spokesperson from DMAS tells me that because the agency doesn't have budgetary authority, two regulations have gone into place. They sent me this updated implementation timeline:

  • March 1, 2024 – any parent currently being paid as an LRI can continue, with two new policies in place:
    • Family caregivers can be paid for up to 40 hours of personal care each week (a non-family caregiver can provide the remaining hours authorized by the plan of care)
    • Families with a paid family caregiver are not eligible for respite services, which is defined as a service for unpaid caregivers
  • Summer/fall 2024 – additional policies scheduled to go in place, subject to General Assembly action

Virginia Beach Dad Antonio Mauro told me in February that it's more than legislation, it's how his son is cared for.
“If you don't have the right person taking care of [your child] negative things will happen,” he says.

His son Giovanni has down syndrome and is nonverbal. Mauro says these rules impact every part of their lives.

"Unless you have a child with a disability and you don't and you don't live it, it's very difficult for you to understand,” he says.

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Antonio Mauro's 9-year-old son, Giovanni.

Aird says this move by the General Assembly and DMAS is an attempt to understand. The next step is for Governor Youngkin to sign the bills.

“I hope that families and parents feel a sense of being heard,” says Aird.