VIRGINIA BEACH, Va. — For the past few years, parents across Virginia have been receiving payments from the state to care for children or spouses with severe developmental disabilities.
The disability exemption program for legally responsible individuals was put into effect during the pandemic, when outside hired caregivers were not going in and out of people’s homes.
Four years after the pandemic began, parts of the programs are set to expire in March, but not without pushback from lawmakers and advocates.
I’ve been taking a closer look at what this disability waiver program is all about, what the new requirements are, and why there’s been such backlash against the changes.
The conversation begins with the Mauro family and 9-year-old Giovanni from Virginia Beach.
“Vanni is on the move from the moment he wakes up in the morning until he goes to bed,” says his father, Antonio.
The elementary school student has Down Syndrome and cannot speak.
“[I’m constantly watching him]”Feeding him, making sure he doesn’t choke, making sure he doesn’t put things in his mouth, making sure he doesn’t run out the front door, making sure he doesn’t flood the house, he’s done all of these things,” Mauro said.[…] If you accidentally leave the door open, he’ll escape and run out the front door. [and] “He’s walking across the street. He doesn’t understand watching traffic on both sides. He did this. And it’s not realistic to trust someone to come to your home for $13 an hour.”
For these reasons, Mauro says Giovanni needs to be monitored 24/7, but finding the care won’t be easy.
“I have to take a bath. [them]”You have to wipe kids’ butts, you have to change their diapers, you have to keep them safe. You have to keep kids alive for $13 an hour, but you can go into a store and just restock the shelves for $24 an hour and still get benefits,” he said.
He tells me that parents are the people who most care for their children.
Mauro said what has happened during the pandemic has been a turning point for families with children with severe developmental disabilities.
In some cases, parents or certain family members could receive compensation from the state for caring for children or spouses.
The law went into effect after the Virginia Department of Medical Assistance Services (DMAS), the state agency that oversees Medicaid, revised its guidelines for the Disability Waiver Program. These changes were made with the oversight and approval of the Centers for Medicare and Medicaid Services.
In the current post-pandemic era, that option expires on March 1, 2024. New regulations are also being considered, including a wage cap of 40 hours per week, a ban on rest periods and restrictions on employer registration.
“They’re not making it easy for individuals to actually use the system the way it’s supposed to be used,” said Sen. LaShreks Aird, who represents the 13th District.
We went up to Richmond to speak with the senator because she’s proposing a bill, SB 488, that would block some changes, like the effort it takes to advertise caregiving to prove that a parent is the best caregiver.
“The whole idea that you have to prove that an outside caregiver is unavailable before you can entrust them with the care of your loved one is a really inefficient process,” she says.
Supporters echoed him on Capitol Hill.
Lucy Cantrell is Director of Information and Resources for The Arc of Virginia, a statewide advocacy organization of people with developmental disabilities, their families and advocates.
“We always say parents are the first resort, not the last resort,” she says.[…] We want the most qualified people possible to care for children with severe disabilities and keep them out of harm’s way.”
I have expressed these concerns to DMAS, who have been working with our federal partners, including the Centers for Medicare and Medicaid Services, to develop this policy.
They declined to be interviewed but said in part:
“The Department of Medical Assistance Services (DMAS) is committed to helping families adjust to the new reimbursement policy that allows legally responsible individuals (parents and spouses of children under 18) to continue to provide personal care/personal assistance services and receive payment for those services.”
[…]
CMS approved Virginia’s new policy on September 18, 2023. The policy will take effect March 1, 2024, allowing sufficient time for family members to complete the necessary processes to remain paid caregivers.
DMAS
To read the full statement, please click on the link below:
3 On
Full statement from the Virginia Department of Medical Assistance Services (DMAS)
February 12, 2024 8:31 AM
DMAS said it worked hard to ensure the policy complied with the safety measures required for approval, which was in fact approved in September 2023.
Supporters of the new requirements argue they open the door to fraud.
Senator Aird said that was a major concern in lawmakers’ conversations with DMAS.
She said: “We met with DMAS to solicit their input and we decided to strike a balance between addressing the concerns they shared – that there be some measure of accountability – and that the programme is structured in such a way that it is not open to fraud.”
Back at the Mauro house, Antonio tells me he works to prevent fraud for Moms in Motion, a service promotion agency that helps people whose exemptions have been approved.
“We make sure there’s no Medicaid fraud. We review timesheets, we review paid attendance, we review what’s going on,” he said.
He says what’s happening will have a major impact on his family and 1,700 others across the state.
“If you have a child with a disability and you haven’t experienced it yourself, it’s very hard to understand,” he says.
The changes were due to take effect in November but were delayed until March to give people time to make the transition, DMAS said.
As we have stated, Senator Aird’s bill is currently under consideration in the state Legislature, and we will continue to keep you posted on developments and whether it makes it to Governor Youngkin’s desk in time for the March 1st deadline.