RICHMOND, Va. -- Two-year-old Ares Cason is a little guy with a lot of energy.
He loves to play, something his mother, Leah Bradley, was prepared to never see happen.
"He was born at 27 weeks. He weighed two pounds," Bradley said. "His NICU course was complicated by a bilateral brain hemorrhage."
In a short span of two years, Ares has survived a brain hemorrhage, cardiac arrest, and countless other medical scares. He was diagnosed with asthma, sleep apnea, and severe autism, unable to speak or chew solid foods.
His list of diagnoses is long.
"I have pretty much lived in survival mode since he was born, especially when I had to resuscitate him with my own hands. That was probably one of the worst days of my life. So since then, it's constantly wondering, is he, is something going to hurt him? Is he going to die? Is he going to stop breathing in his sleep from the sleep apnea? I'm constantly in survival mode," Bradley said.
Bradley supervises her son nearly 24/7, unable to sit down, on edge, she said, almost every second.
"I probably get about 12 hours of sleep a week, if I'm being honest," she said.
Throughout the pandemic, Bradley was allowed to be paid as a Legally Responsible Individual, able to get paid to provide care to Ares each day. Bradley said she made roughly $1,400 a month doing so, using the money to support herself, Ares, and her 16-year-old son.
"It's paying for basic stuff. It helps me not have to work full time, which allows me to be home for him and not put him through the emotional rollercoaster of having a revolving door of caregivers to come in," Bradley explained.
On September 9, Virginia's Department of Medical Assistance Services announced it'd be changing payment requirements due to the end of the COVID-19 pandemic, saying parents can only be paid as Legally Responsible Individuals if they've exhausted all other options of care, like hiring a personal care attendant, or 'PCA.'
Bradley said considering how medically complex Ares is, she's never been able to find the perfect assistant to help with Ares. The family must follow very specific medical instructions and attend hours of appointments each week. Bradley said some assistants wouldn't be able to give Ares some of his medications because they're prescribed by a doctor.
"Finding somebody to even come and go through, giving him meds, which they can't do anyway, but he needs his medicine, so I have to have somebody here to give him medicine, on top of having a PCA here to help with feeding, toileting, diapering, it's just too many hands in the pot for an autistic child," Bradley explained.
"Families are left wondering, 'Well what am I going to do?' I have to go back to work full-time. I have to find providers. A lot of these children like Ares can't go to daycare. Daycare will not take children who after a certain age still need to be toileted, need to be fed, who need medications," she said.
Families must be able to prove they meet the new list of requirements in order to be paid as Legally Responsible Individuals by November 11.
The Department of Medical Assistance Services (DMAS) said in order to continue to provide payments permanently, new requirements would need to be put in place.
"Anytime you go from where what we had during the public health emergency, where there weren't any restrictions at all. And you try to trim those down, it makes it very hard because you're going from a system where parents could get paid for a numerous amount of hours, didn't have to fill out any paperwork specific to justifying why they were the only ones doing it," said Tammy Whitlock, the Deputy Director of Complex Care and Services with DMAS. "There were other things, they could just bill. And now we're narrowing it down, making it you know, harder, but also justifying our program, and making sure that we meet the requirements to get the federal match for Medicaid, for the money we're spending on these services."
"What we're asking though, is that the flexibilities that were originally done is over. No different than masks are over, you know, those things have changed. So that's why we have to have different policies and procedures to support it. It's not that we're trying to eliminate the process," Cheryl Roberts, the Director of the Department of Medical Systems Services, said.
Bradley worries she'll have to go through the cycle of finding help again, despite having a letter from one of Ares' doctors that she showed CBS6 reading: "Given his medical complexity, she's the only person who can primarily care for him."
A victim of domestic violence, Bradley said she will have to face these changes mostly alone, but she's not the only one who is fearful.
According to The Arc, a nonprofit in Richmond that works with families of disabled children, more than 2,000 families across Virginia who were once eligible will now need to provide new information proving they are the only ones who can give care to their child.
"We're hearing from hundreds and hundreds of people through Facebook and people are calling each day, desperate for solutions," said Executive Director Tonya Milling.
Whitlock said only about 1,600 families actually used the paid provider benefit during the pandemic.
During a Zoom call Thursday afternoon, CBS6 asked if changing requirements would decrease the number of people who could participate in the program, or if the same amount would be able to meet the requirements.
"I don't think we can speculate. I don't know," Roberts said. "We don't want to go into a defense of this. We really are trying to help the parents. But your questions are starting to change. Nothing is wrong. But we're not in defense mode here. We're supposed to be information gathering. We're not trying to hurt anyone. That's what we're trying to get across. And if anyone wants to talk to us, they know how to find us. They can find us in our health plans. And what we can say is that if any parent or any caregiver needs to talk to us individually about their case, we have both the health plans and ourselves are willing to talk about it."
"They may decide that Aunt Sally is sitting here and she can now take care of the child or, we don't know. There's different options. It's not all the same. Some parents may say that's fine. And so, the parents may say, 'This is what I want to do. And so, the goal of the exercise is not to eliminate choice, but to give choice," Roberts continued."
Other changes say parents cannot be an Employer of Record, who would keep track of hours and pay of parents being paid for care. They must live within a 50-mile radius.
"That's really difficult for military families who may not have family nearby, but really for anyone, asking your friends or neighbors to become this legal employer of record is a big ask and it's an unpaid ask, so that's putting a burden on families," Milling said.
The new requirements also say that paid adults will not receive more than 40 hours of pay a week.
"If you are choosing to be a parent paid as a provider, you forfeit your right to respite care. Respite care is when someone comes into the home to give you relief. And forfeiting that really doesn't make sense when just because one parent may be providing 40 hours of paid care for their child, they're still providing round the clock for their child, and they're just paid for those 40 hours," Milling said.
Milling said DMAS could make a federal request to extend the November 11 deadline. When asked if DMAS is considering doing that, Roberts said: "We always look at everything and every opportunity, but we won't be able to give a definitive answer right this second."
Roberts said they'd have to hear from the Centers of Medicare and Medicaid Services to see what the extended deadline would be.
"We are here to answer their questions and we want to make sure that the individuals that are on our waivers receive the care that they need. And however they get that, you know, we are willing to work with anybody to make sure that happens," Whitlock said.
"Most, 90% of the people have managed care plans. So, they should be able to talk to the managed care plan," Roberts said. "They'll talk to them about their case management options, as well as the care options that they have. They have two choices."
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