Story by Joey LoMonaco, May 21, 2024
When Emily Sagle sat down to draft a Facebook message this past November, her zeal for helping families living with severe disabilities was tempered only by a deeply ingrained skepticism of bureaucracy.
“I was like, ‘The government is long lines and red tape,’” recalled the Stafford County mother of two, “it will never go anywhere.”
Sagle’s message did, however, find the inbox of its intended recipient, then-Delegate-elect Joshua Cole.
Within weeks, she had secured a sit-down meeting with Cole — who’d been elected only weeks prior — and a staffer at a Fredericksburg-area Starbucks to discuss a potentially expiring Medicaid waiver program that allowed parents to be paid as caregivers for their disabled children.
“That was my soapbox,” she said.
Sagle’s self-proclaimed soapbox would ultimately reach the floor of the General Assembly in Richmond, where HB1318 — a bill patroned by Cole — passed the House 100-0 and the Senate 39-0. Gov. Glenn Youngkin signed it into law April 5, and it takes effect July 1.
‘I think he was really shocked’
Sagle doesn’t gloss over the job requirements associated with caring for her 11-year-old son, William. He’s nonverbal, autistic and suffers from various medical and genetic conditions that preclude him from attending Stafford County Public Schools.
“You’re asking someone to get paid $16 an hour to change the diaper of an 11-year-old and possibly have to block them hitting you or pinching you,” she said. “You have to block them from injuring themselves. That’s a lot to ask for $16 an hour.”
Due to William’s disabilities, Sagle finds it practically impossible to work outside the home.
“People don’t know how to care for him or watch him,” she said.
During the pandemic, her family benefited from a federal rule called “Appendix K” that allowed legally responsible individuals (LRIs) to be paid $16/hour to provide care. Previously, LRIs were not eligible for reimbursement in Virginia unless no home care employees were available.
“There was a huge push for this to continue [after the pandemic],” said Debe Fultz, the executive director of disAbility Resource Center (ARC), an organization that supports individuals with disabilities, as well as their families and caregivers. “It’s a program we really needed because there’s a huge shortage of caregivers.”
Even when the lockdowns were lifted, Sagle realized that availability didn’t equate to quality when it came to in-home care.
“You’re asking me to put someone in my home, pay them $16 to care for my nonverbal child, when they can go down the road and get paid $20 an hour at Target,” she said. “And probably have an easier job. It didn’t sit right with me.”
For his part, Cole admitted he was unfamiliar with the issue prior to meeting Sagle and encountering other similarly ardent parents while knocking on doors during his campaign.
The legislator’s epiphany came during his meeting with Sagle when she produced a study from the University of Michigan with data showing that up to 90% of individuals with severe disabilities will be sexually abused during their lifetimes.
Many, like Sagle’s son, would be unable to tell anyone what happened.
“The moment that she said that, I understood immediately where she was coming from,” Cole said. “These parents and these family members are not trying to take advantage of a system; they’re trying to make sure that their loved ones get the best care they deserve.”
Added Sagle: “In a positive way, I think he was really shocked.”
A glaring need
Under the pandemic-era federal Medicaid rule, caregivers can receive up to 40 paid hours per week based on a calculation that takes into account specific nursing or institutional criteria such as toileting, feeding and self-care.
The reimbursement comes from a 50-50 split of Medicaid and state dollars, said Fults.
“I think it certainly helps with them to be able to pay the bills and not have to work outside the home,” Fults said. “But the other thing is they have the flexibility to do what they need to do for their child.”
Fults offered the example of a parent whose severely disabled child needs an extended hospital stay.
“Medicaid’s not paying for you to have an attendant go to the hospital, because they’re paying for the hospital,” she said. “But the child’s not safe being in there by themselves. So you can’t go to your job.”
The program offers no additional benefits beyond six paid days off per year, and Sagle bristled at the notion that families are receiving waivers they don’t need.
“It’s a rigorous process you have to go through with the state,” she said. “There’s a lot of people that I feel deserve the waiver that aren’t approved. It’s not just like they hand these out.”
As of January 2024, there were 16,903 individuals assigned a community living waiver slot, including 4,805 in family and individual support care, according to statewide data from the Virginia Department of Behavioral Health and Developmental Services. Thousands more linger on a waiting list that remains stubbornly long despite 344 added slots over the past two years.
At the end of their meeting last year, Sagle asked Cole if he could help.
“If it’s as simple as setting up a piece of legislation, then absolutely I can,” he replied.
‘They figured it out’
In January, Cole was appointed to serve on the Health and Human Services Committee in the House of Delegates. Shortly after the new legislative session began, he approached the committee’s chair, Del. Mark Sickles, who encouraged him to draft a bill.
“Once the bill came forth, I had people standing up to support the bill,” Cole said. “The line was out the door in the committee room.”
(Photo by Amanda Maglione)
One of the individuals who queued up at the General Assembly to speak in support of the bill was Sagle’s husband, who asked not to be named for this article. Cole also began a dialogue with ARC to tailor the legislation for maximum benefit for families.
Still, Sagle remained guardedly optimistic.
“Parties don’t usually get along,” she said in an understated tone.
The bipartisanship attached to Cole’s bill throughout the legislative process is notable; among the 201 vetoes Youngkin unleashed last month, HB 1318 was nowhere to be found. In the interim, Virginia extended the federal rule until July, meaning there will be no lapse in care or payment for affected families.
“Virginia, you know, good for them,” Fults said. “They figured it out: how to allow this and still protect our resources and not spend too much money, right?”
While Sagle hasn’t embraced a new identity as a political operative, she does marvel at how quickly her initial inquiry spurred action. She’s thankful to Cole, Youngkin, and lawmakers on both sides of the aisle who recognized the need for a long-term solution in the form of legislation.
“I wish that my son’s life was easier, and I wish that my life was easier, but I also like to bring attention to it and help others,” she said. “I love my life, and I’m blessed, but it’s not easy.”