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Virginia Medicaid halts part of new caregiver regulations

Susannah Clarke comforts her 12-year-old daughter, Isabelle, at the front door after a day at school.
Henry Brannan / WMRA News
Susannah Clarke comforts her 12-year-old daughter, Isabelle, at the front door after a day at school.

Hours before new regulations were set to take effect on Friday, Virginia’s Medicaid agency halted most parts of new regulations for caregivers it announced last year.

The move came after months of outcry from families and advocates.

The restrictions from the Department of Medicaid Assistance Services would have applied to caregivers who take care of a Medicaid-enrolled spouse or minor child with an approved disability. The caregivers are known as Legally Responsible Individuals or LRIs.

When the COVID-19 federal Public Health Emergency was enacted, LRIs were allowed to be reimbursed by Medicaid for some approved “extraordinary care” they provide. The General Assembly made that policy permanent in 2022.

The extended flexibility was initially set to end in November 2023 when new DMAS guidelines would start to regulate the flexibility. DMAS moved the end date to March 1, and maintained that deadline until the last-minute pause on the changes.

The restrictions would have required LRIs to prove no one else was able to care for their minor child or spouse in order to be reimbursed. They also put limits on who could play an administrative role in the caregiving — blocking parents, stepparents and anyone more than 50 miles away.

VPM News/WMRA previously reported many families felt the restrictions would make it nearly impossible to be reimbursed for the care they provide to their loved ones with disabilities.

DMAS did go forward with two of the new restrictions:

1) Limiting reimbursable hours to 40 a week 
LRIs can be reimbursed for up to 40 hours of care each week. They’re allowed to provide additional reimbursed care if the minor child or spouse is approved for more than 40 hours of care a week.

2) No “respite” care
LRIs will no longer have access to "respite" care. The move means only paid LRI will be able to be reimbursed for the first 40 hours of care the Medicaid enrollee is approved for.

There are currently three bills in the General Assembly that would affirm the 2022 budget amendment and make LRI flexibilities permanent. But those bills would go into effect July 1 at the earliest, leaving a four month gap between then and the March 1 implementation date.

In a statement to VPM News/WMRA, DMAS said the pause was to avoid taking away flexibilities that might be reinstated months later if the bills succeed.

Some of the people VPM News/WMRA initially spoke to said they had not been notified of the changes, and instead found out through parent networks, advocacy organizations or, in one case, from VPM News/WMRA asking them about the situation.

The announcement does not include a date the flexibilities will end. But DMAS wrote “summer/fall 2024” was when additional policies were “scheduled to go in place, subject to General Assembly action.”

Relief, gratitude and frustration

After months fighting the impending restrictions, Tonya Milling, executive director of The Arc of Virginia, celebrated the move by DMAS.

“We were thrilled,” she said. “I am very appreciative that DMAS really listened to and responded to the advocacy community.”

Milling feared that the gap between the averted regulations and potential new legislation would disrupt care for the estimated 1,700 LRIs currently being reimbursed to provide services.

Since the new regulations were announced a year ago, families have scrambled to meet the changing requirements.

“It's the equivalent of a part-time job,” explained Summer Sage, the LRI for her autistic son. She’s also a disability advocate with 10 years of experience, including her two terms on the Virginia Board for People with Disabilities.

Sage estimated she has spent a minimum of 20 hours a week for the past year trying to meet the new requirements, follow DMAS and legislative updates, find backup caregivers in the rural area where she lives and advocate for the agency to approve flexibilities other states have. That’s in addition to being her son’s sole caregiver.

Melissa Louis is the LRI for her two young children. She said the pause came as a massive relief but was tempered with frustration about the months of anxiety her family experienced

“I'm grateful for another extension,” she said. “But I don't know, I just spent six hours today trying to fill out additional paperwork and do everything that they needed done.”

Louis said it would be impossible to quantify the time she spent getting ready for the change, but the process left her in a state of constant stress.

That stress has taken a toll on LRIs, with their numbers decreasing by about 500 people in the past year, according to DMAS data.

Since the agency gave VPM News/WMRA those numbers, Susannah Clarke chose to bow out of the program. Until recently, Clarke was LRI for her daughter, who has CHARGE and Lennox-Gastaut syndromes.

But when she couldn’t find anyone to fulfill the administrative role her brother held until the distance restrictions disqualified him, she was out of options.

“It's the anxiety that you carry every single day, day in and day out,” she said. “While I'm driving, while I'm sitting in a band concert, while I'm sitting at my desk trying to help clients, while I'm — it's just this thing at the back of my brain that I'm always trying to figure out.”

Bills to address the issue

With most of the restrictions paused, it will be up to the General Assembly to act.

The three bills to address the halted regulations are SB488, HB909 and HB1318. The last of the three only ends the requirement that no one else be available to care for the Medicaid enrollee. It now heads to the governor’s desk.

Milling, with the Arc of Virginia, said the other two bills address the other restrictions, except respite care. While there’s work left to align them — a move that paves the way for their passage — she said their prospects are promising.

Right now, the primary difference between the two pieces of legislation is that one directs DMAS to conduct a study on the changes, while the other directs the agency to get federal approval — then implement them.

Del. Irene Shin (D–Herndon) is the patron for HB909.

“I've been not just frustrated to see this, but I've also been really confused by the kind of resistance I've seen from DMAS,” she said. “When really, I hope that we can all be on the same page, and making sure that our Medicaid recipients who need the care, that their needs and their care really is the first priority.”

She said she’s hopeful that with the potential passage of the bills, Virginia can join states like Minnesota, West Virginia and Kentucky that have similar flexibilities.

To Shin, the pause also highlights the power of advocacy.

“It's a testament to the kind of policies that are possible when advocates make their voices heard,” she said. “It's how we ensure that the policies that are coming out of Richmond — whether it's in the capitol or in an agency — are going to actually respond to the needs and the difficulties or challenges that Virginia families are facing.”

For families, the pause is an opportunity to catch their breath.

“I keep thinking, ‘Alright, it's March 1, and everything's going to change and it's probably not going to be great but I need to be prepared for that,’” Louis said. “And then, now, we can breathe a little.”

Henry Brannan covers rural health care in the Shenandoah Valley and Charlottesville area for WMRA and VPM News. The position is in partnership with Report for America.