The clock is ticking for Catherine and Mike Rey, of Bon Air. Their sons — J.P., 12, and Louie, 10 — were both born with alpha thalassemia X-linked intellectual disability, a genetic syndrome that affects their motor skills and ability to communicate. They require assistance walking and feeding themselves.
Federal law mandates that students like J.P. and Louie receive occupational, physical and speech therapies at school — all paid for through Medicaid. But once the boys leave school, the Reys will need to provide care for them day and night.
While they’re still in the classroom, Catherine has time during the day to run errands, do work around the house and sometimes work as a substitute teacher. In the afternoons, she relies on a handful of part-time helpers, often graduate students who are paid $13.34 an hour through Medicaid, to watch one son while she takes the other to doctors’ appointments, physical therapy or the store.
Without the extra hands, Catherine said it’s difficult to leave the house with both of her sons.
“Right now, we have a typical double stroller that they can squeeze into, but it’s awkward,” she said. “We do it if we have to.”
But once they’ve left the school system — and outgrown their double stroller — Catherine worries about finding care, and how she and her husband will cover the cost.
Mike’s work provides the family’s primary health insurance; Medicaid is their secondary insurance, which pays for the durable equipment the siblings require to sleep, eat and get around.
J.P. and Louie are also eligible for waiver services through Medicaid, which allow them to live at home and get care in their community.
Virginia developed its waiver system in 1990 in an effort to divert people from full-time nursing facilities. The waivers cover the cost of home care and community-based support services for children and adults who qualify for Medicaid.
The Reys have a commonwealth coordinated care plus waiver that pays for attendant care, but the family is responsible for hiring and training the care providers, who are often temporary. Catherine said it’s one of the most challenging aspects of caring for her sons.
“It’s very difficult to find people to do that job at that rate. It’s something that we technically have access to, but it’s harder to actually utilize it,” she said. “This is not a typical babysitting gig.”
The boys have been on a waitlist for a developmental disability waiver for 10 years. There are limited slots, which are assigned by need. These waivers provide families with more robust care options, including a case manager and 24-hour-a-day care if needed.
“We have about 10 years until J.P. graduates school, and then we’ll start the bulk of his life as an adult and that care,” Catherine said. “The clock is ticking, so you feel that more and more.”
Challenges for developmental disability waiver recipients
Mark Dixon got his developmental disability waiver — what some refer to as the “golden ticket” — when he graduated from high school in 2001. The 43-year-old lives at home with his parents in Gloucester. He has cerebral palsy and Asperger’s syndrome, and requires assistance with most daily living activities.
The waiver provided him a support coordinator and additional hours of respite care, but Dixon said he and his family still struggled to meet his needs. He went through a series of care coordinators who were based hours from his home, and his family has faced challenges finding qualified care providers who were willing to work for Medicaid’s reimbursement rates.
“The key is to find consistent care providers where you live, so you won't have to deal with having a whole bunch of different people in your home that are unfamiliar with the case,” Dixon said.
Despite the frustrations of finding care providers, he said he prefers living at home and being as independent as possible.
Cuts threaten state's progress clearing waiver waitlist
In 2024, Gov. Glenn Youngkin and the General Assembly took steps to address years of frustrations about long waits to receive developmental disability waivers and confusion about who took priority on the waitlist. The governor signed a bill adding $247 million additional funds for the waiver system, which provided more slots for patients with the highest need. By June 2026, Virginia is expected to have added 3,440 developmental disability waiver slots, as well as a 3% service rate increase for care providers.
Right now, there are about 17,000 people with developmental disability waivers in Virginia and another 15,550 on the waiver waitlist. There is no waitlist for the CCC+ waiver, because it offers fewer services and is less expensive to administer.
Tonya Milling, executive director of The Arc of Virginia, an advocacy group that represents people with developmental disabilities, said the commonwealth has an interest in providing these resources.
“When people are part of their community, they are often working, paying taxes, and have the support they need to work,” Milling said. “There is an economic benefit to everyone belonging.”
Despite the progress in Virginia, Milling worries about possible cuts at the federal level.
Republican congressional leaders have said they would like to cut $880 billion from the federal budget over the next decade. The U.S. House Committee on Energy and Commerce has been tasked with finding areas to make these cuts. Despite promising not to cut Medicaid, the only place the agency could find those savings would be to eliminate funding to Medicaid — according to a report released in March by the nonpartisan Congressional Budget Office.
“The idea that progress could go backwards is just terrifying,” Milling said. “We’re finally making headway. We’re finally getting to a place that we could be a proactive system, instead of reactive, when all you can do is give people services once they’re already in crisis.”
Teri Morgan, executive director for the Virginia Board for People with Disabilities, expects that while cuts will be made at the federal level, the decision on which services to cut will be left up to the states.
While Morgan said she doesn’t expect the waiver system to be cut, she said funding decreases could limit the types of available services, slash provider rates and reduce eligibility.
“When you look at how Medicaid dollars fund a lot of small businesses, private providers, rural hospitals and the direct care workforce, if those monies are reduced, it’s going to have an economic impact — on top of the impact on individual lives,” Morgan said.
Catherine Rey said while she’s been advocating for her family’s care at the state level, she is now reaching out to the state’s Congressional delegation to fight to preserve federal funding.
She, along with several other developmental disability advocates, met with staff from Rep. Rob Wittman’s (R–Henrico) office in March.
“Our ask is that he do whatever he can to avoid those cuts,” Catherine said. “I felt like we were heard in that meeting, but I don’t know what effect it will have.”
When asked for a statement, Wittman’s office wrote via email: “Our Medicaid system is broken and in need of real reform, so people like the Rey brothers can receive the long-term care they need. By eliminating waste, fraud, and abuse, we can strengthen the program so that it can continue to support future generations.”
Catherine hopes her family will have a reliable option for her sons’ care as they grow older.
“We need to be able to trust that’s going to be there,” she said, “and that we will have the support that we need for their lifelong care.”
