By Justin Ide
The Virginia Center for Investigative Journalism at WHRO
The road to adulthood begins for most when they graduate from high school and move on to a first job or college, to paying bills and living on their own. But for people with cognitive disabilities or autism, leaving high school is a more monumental step, one that will transform their relation to their families and the community that supports them.
That monumental step has been on the minds of Andrew and Barb Baxter, both 57, of Charlottesville, Va. for years. Their 24-year-old son, Peter, is on the autism spectrum and has an intellectual disability.
“Every family that has a young adult with significant disabilities, while they're in a school system, are accelerating towards a cliff. And that cliff is, what am I going to do with my now young adult with a disability?” Andrew Baxter said. “The bigger sort of existential question that you're really asking is what happens when I'm gone? What happens when we're gone?”
In the coming years, a growing number of students with cognitive disabilities and autism spectrum disorder (ASD) are expected to leave high school and flood the U.S disability system, where waitlists abound.
An estimated 50,000 Americans with ASD will turn 18 each year, researchers wrote in a 2013 study in the Journal of the American Academy of Child and Adolescent Psychiatry. It’s part of a surge of children diagnosed in the 1990's, according to a 2008 study in the Journal of Autism and Developmental Disorders.
In Virginia, approximately 150,000 people have some form of autism, and there are currently more than 13,000 Virginians on a waitlist for a disability waiver.
“We know there’s a crisis coming,” says Peter Gerhardt, chair of the Organization for Autism Research’s Scientific Council. “It’s not just a money crisis. It’s a service crisis.” The goal of independent living, shared by all teens, may seem further from view for those on the spectrum.
Most families with children on the spectrum or with cognitive disabilities begin thinking about this transition when their child is a baby. Most are left to figure it out on their own. “There's no manual on how to deal with children to begin with, much less children with autism,” Barb Baxter said.
Pete has a strong family and community helping him navigate this transition. “Pete has always said, since he was much younger, ‘We’ll always be together,’” said Barb. “Andrew and I had resigned ourselves that was going to be the case, for his own longevity and ours. We had hoped that he would have a future without us, so that when we were gone, we knew that he would be okay.”
After graduating from Monticello High School in 2017 with a Special Ed diploma, Pete took some steps toward independence. He works three days a week at Snow’s Garden Center, watering plants, moving boxes and helping customers. He also helps his parents with their cleaning business, servicing local gyms and several short-term rental units.
The family felt he could grow even more – in the right environment. The “Raymond Avenue Project” was born.
The Baxter’s daughter, Kate, is one year older than Pete and a University of Virginia graduate. She is an ICU nurse at UVA Hospital, where her parents also work as nurses. “Pete has always said he wanted to go to UVA,” Andrew said. “Ever since that day we dropped Kate off there.”
Kate happened to be assigned a dorm room in Woody House. Pete, a fanatic of Toy Story movies and their main character, Woody, decided that’s where he was going.
With help from a neighbor, the Baxter’s found an apartment near the UVA campus on Raymond Avenue. The Baxters’ plan was starting to come together. “We decided that by the end of August of this past year, Pete would be in a place,” Barb said.
Because Pete needs constant supervision for his own safety, the next challenge was to find roommates who could help him with daily life skills and the security he needed. “We kind of put out a flyer, to see if anybody was interested in living with Pete,” Andrew said.
Dr. Martin Block, an adaptive physical education professor at UVA, regularly has students work with kids like Pete. The Baxters asked Block if they could hire a grad student to be Pete's roommate. Block suggested Haley Mitts, a student studying for a masters degree in education.
Toni Jackson, an athletic trainer and counselor who worked with Pete for several years, also quickly volunteered.
On August 31, 2022 Andrew and Barb rented a U-Haul and, with the help of friends and family, moved Pete into the Raymond Avenue apartment “Haley and Toni live with Pete and they are three peas in a pod. It is great,” Barb said. “They support Pete and they protect Pete, and it's just it's been an awesome transition for him.”
The Raymond Avenue Project has been transformational, Andrew said. “When you see Pete, in the community, or at Raymond Avenue, you see a young man who's living at a level of independence that two years ago, I don't think many people would have predicted would have been possible,” he said. “But what you're seeing is the tip of an iceberg of a support system that's been put in place.”
In the first six months, things were going well with a few hiccups. Pete’s family and caretakers have juggled responsibilities for ensuring he takes medications for his seizure disorder and asthma. They also juggle a complicated schedule to help Pete with basic daily tasks, including providing him with healthy meals and getting him to work and other appointments.
And like many people with autism, Pete is at a higher risk of victimization from strangers. Constant supervision is required for his own safety and well-being.
But his family and partners in the Raymond Avenue Project have been able to overcome many of the challenges. “I have to tell you when he first left, it was a little weird around here,” Barb said. “Andrew and I never expected we would be empty nesters … It's comforting to know that if something happened to one of us or both of us that there are people in place that care about Pete.
“There's a lot more to do,” she said, “but at least we're heading in that direction.”
Although Pete struggles to express himself in words, he’s made it clear he’s embraced the transition. He flashed his signature double thumbs-up to friends and family during moving day.
And right after a recent Sunday church service, Pete asked, “Are we going back to Raymond Avenue?”
