VIRGINIA BEACH, Va. — For the past few years, some parents across Virginia were getting paid by the state to take care of their kids, and spouses, who have severe developmental disabilities.
The disability waiver program for legally responsible individuals went into effect during the pandemic when outside-hired caretakers weren't going in and out of people's homes.
Now, it's been four years since the pandemic started, and parts of the program are about to expire in March, but not without pushback from legislators and advocates.
I'm digging deeper to learn what this disability waiver program is all about, what the new requirements are, and why there's backlash over the change.
The conversation starts in Virginia Beach with the Mauro family and 9-year-old Giovanni.
“Vanni's on the go from the time he wakes up to the time he goes to bed,” says his dad, Antonio.
The elementary schooler has down syndrome and is nonverbal.
“[I’m constantly watching him], feeding him, ensuring he doesn't choke, ensuring he doesn't put objects in his mouth, ensuring he doesn't run out the front door, ensuring that he doesn't do all these things - that he doesn't flood the home – he's done all these things,” says Mauro. “[...] If you leave a door open just by accident, he's gone, he's running, he'll run out the front door [and] up the street. He doesn't understand looking left and right for traffic, he did these things. And putting your trust in somebody at $13 an hour to come into your home, it's not realistic.”
Mauro says for those reasons, Giovanni needs to be watched 24-7, but finding that care isn't easy.
“You have to bathe [them], you have to wipe their behind, you have to change their pull-up, you have to ensure their safety. Their life is in your hands at $13 an hour, but I could go to a store and stock shelves for $24/hour and get benefits,” he says.
He tells me that parents are the ones who will take care of their children with the greatest care.
Mauro says what happened during the pandemic was a game-changer for families whose kids have severe developmental disabilities.
In part, parents or certain family members were able to get paid by the state for taking care of a child or spouse.
It went into effect after the Virginia Department of Medical Assistance Services (DMAS), the state agency that oversees Medicaid, revised guidelines for its disability waiver program. These changes were made with oversight and approval from the Centers for Medicare & Medicaid Services.
Now, post-pandemic, that option is expiring on March 1, 2024. There are also new regulations on the table, including pay being capped at 40 hours a week, allowing no respite hours, and having limitations on who the employer of record can be.
"They're not making it easy for individuals to actually utilize the system as it was intended to be,” says Senator Lashrecse Aird, who represents District 13.
We traveled to Richmond to talk with the Senator as she's proposing a bill, SB 488, that would stop some of the changes, like the lengths a parent would have to go to advertise for care to prove they're the best caretaker.
“Just this idea that you really have to prove that an outside provider isn't available before you can be that person to provide the care for your loved one — it just really is an inefficient process,” she says.
Advocates echo that at the Capitol.
Lucy Cantrell is the Director of Information & Resources with the Arc of Virginia. The Arc of Virginia is a statewide advocacy organization made up of people with developmental disabilities, their family members, and their allies.
“We always say parents are the first resort, not the last resort,” she says. “[…] we want the most qualified people possible, taking care of children with significant disabilities, and not putting them in harm."
I took those concerns to DMAS, who has worked with federal partners, like the Centers for Medicare and Medicaid Services, to create the policy.
They declined an interview, 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 of children under age 18 and spouses) to continue to provide personal care/personal assistance services and be paid for those services.
[...]
CMS approved Virginia’s new policy on September 18, 2023. It goes into effect on March 1, 2024 to give families enough time to complete the process required for them to remain paid caregivers.
To read the full statement, click on the link below.
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Virginia Department of Medical Assistance Services (DMAS) full statement
DMAS noted it worked to ensure the policy complied with the safeguards required for approval. The policy was, in fact, approved in September of 2023.
Those who are in favor of the new requirements argue the potential for fraud.
Senator Aird says that has been a big concern during legislators’ conversations with DMAS.
She says, “We had a meeting with DMAS to seek their inputs and to really strike a balance between the concerns that they have shared around making sure that there are some measures of accountability, and that the program was structured in a way that doesn't lend itself to fraud.”
Back at the Mauro's, Antonio tells me his position working for Moms in Motion, a service facilitator that helps people who are approved for the waivers, works to prevent fraud.
“We verify that there's not Medicaid fraud. We look at timesheets, we look at the paid attendance, we look at what's happening,” he says.
What’s happening now, he says, will have big impacts on his family and 1,700 others across the state.
“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.
The changes were supposed to go into effect in November but were postponed until March to give people more time to transition, DMAS says.
As mentioned, Senator Aird's bill is making its way through the General Assembly. I will keep you posted on what happens and if it reaches Governor Youngkin's desk before that March 1 deadline.
