ADRIENNE HOAR McGIBBON: Catherine and Mike Rey are raising their two sons, J.P. and Louis, in Bon Air.

CATHERINE REY: We're just a regular family in a lot of ways, and we want what everybody wants for their children, which is for them to be healthy and happy and secure.

ADRIENNE HOAR McGIBBON: J.P. is 12 and Louis is almost 10.

CATHERINE REY: J.P. is very tender hearted and sweet.

And Louis is very feisty and charming.

ADRIENNE HOAR McGIBBON: The brothers were born with a genetic syndrome, alpha-thalassemia, or ATRX, that affects their motor skills and ability to communicate, requiring assistance to walk and feed themselves.

CATHERINE REY: Parenting or caring for them really requires constant vigilance.

ADRIENNE HOAR McGIBBON: The Reys get insurance through Mike's work, but they also rely on Medicaid to cover the cost of medical equipment and in-home care providers.

CATHERINE REY: This is not a typical babysitting gig, right?

ADRIENNE HOAR McGIBBON: The family gets what's known in Virginia as a Commonwealth Coordinated Care Plus waiver.

That helps them pay for extra help.

It's difficult, but it's working... for now.

CATHERINE REY: We need to be able to know that we'll be able to hire people that can work with us, especially as our children get bigger, and as Mike and I get older and our bodies age and we have a harder time physically caring for them.

ADRIENNE HOAR McGIBBON: Mark Dixon spoke with me from his home in rural Gloucester, where he lives with his parents.

The 43-year-old has cerebral palsy and Asperger's syndrome, and needs assistance with all of his daily activities.

MARK DIXON: We're trying to get services in a rural area so we- so I can continue to live independently as possible in the long-term.

ADRIENNE HOAR McGIBBON: When he graduated from high school in 2001, Dixon received a Developmental Disability Waiver.

MARK DIXON: Which allowed me to have more hours of personal care and respite care.

ADRIENNE HOAR McGIBBON: But even with the additional support, he struggled for years to find quality care providers near his home.

MARK DIXON: The key is to find, consistent care providers, where you live, so you wont have to deal with having a whole bunch of different people in your home that are unfamiliar with the case.

ADRIENNE HOAR McGIBBON: Both Dixon and the Reys are part of the roughly 264,000 people managing developmental disabilities in Virginia.

Of those, about 17,000 people currently hold DD Waiver slots and nearly 16,000 people, including J.P. and Louis Rey, are on the waiver waitlist.

In 2024, Gov.

Glenn Youngkin pushed to get people in crisis off of that waitlist, an effort lauded by disability advocates.

TONYA MILLING: The General Assembly and governor had come together and said, let's completely wipe that out and fund everybody who's in crisis, and then we can make long-term plans.

ADRIENNE HOAR McGIBBON: Tonya Milling has been advocating for the developmental disability community for more than 25 years.

TONYA MILLING: The idea that that progress could go backwards is just, is terrifying.

Not just for individuals, but as the full system that we're finally making headway, we're finally getting to a place that we could be a proactive system instead of reactive.

ADRIENNE HOAR McGIBBON: If there are cutbacks, Rey says she worries what could happen when her boys finish school.

CATHERINE REY: As we get older and we get closer, potentially to a crisis situation where we're not physically able to care for our children, we need to be able to trust that that's going to be there and that we will have the support that we need for their lifelong care.

ADRIENNE HOAR McGIBBON: Despite having a steady income, she says without Medicaid, her family would struggle to meet J.P. and Louis basic needs.

CATHERINE REY: I mean, it's essential health care for them.

It's not... it's not like some exceptional like handout or something.

This is just meeting their basic health needs.

ADRIENNE HOAR McGIBBON: Adrienne Hoar McGibbon, VPM News.