Girl with rare genetic disorder can’t find residential care
Charlotte’s parents, Matt Lange-Geise and Christina Hartman, can’t get care for their 10-year-old, who has disabilities.
On his daughter’s first day of fifth grade, Matthew Lange-Geise got her dressed and fed before heading outside with 10-year-old Charlotte to wait for the bus.
The school bus was late, as it often is on the first day of school, while drivers and students adjust to new routes and routines. Charlotte can’t speak, but Lange-Geise could tell she was anxious until she saw the bus drive up. When he helped her up the steps, he said, she was “happy as a clam.”
Lange-Geise watched the bus drive off to Maryland’s Bethesda Elementary School, hoping Charlotte would have a good first day back. A good day for Charlotte means no tantrums, no behaviors that cause harm to herself or others and hopefully some positive interactions with her peers. Charlotte has Ogden Syndrome, a rare condition that can cause severe developmental delays, and pica, an eating disorder that prompts her to try to eat nearly everything in reach, including non-food items. Her parents said she has the mental capacity of a 12-18 month old, and likely will for the rest of her life.
Charlotte is very social, Lange-Geise said. That’s one of the reasons why he and his wife, Christina Hartman, sent her back to Bethesda Elementary this year, even though the public school district recommended months ago that Charlotte switch to a private, residential school that can meet her educational and care needs. Lange-Geise and Hartman agreed to pursue residential programs and followed up on referrals to seven residential schools in their home state and across the Northeast. But none of them could take Charlotte for the new school year.
After talking with other parents and experts, Lange-Geise and Hartman now understand it could take several more months, or even years, before they find a school with an open seat that can serve Charlotte.
“There’s just no place for her,” Hartman said. “None of them have spots.”
Parents of children with disabilities often find themselves advocating to get their kids the support they need to thrive. While the vast majority of the 7.5 million special education students in the United States stay enrolled in regular schools, according to the National Center for Education Statistics, experts say some children can benefit from programs dedicated to students with disabilities. But because these programs are rare and many have years-long wait lists, some families are left with nowhere to go. Some students, like Charlotte, continue in the public school system while parents search for a solution. Others with more extreme behaviors are sent home with no educational pathway at all.
Michael Graglia, of California, said his 12-year-old son, Tony, was out of school for months at a time while they searched for a program that would take him. Tony has SYNGAP1-Related Disorder, which has led to several neurological issues including epilepsy and profound autism. When he gets upset, Graglia said, Tony can be violent, which has become more challenging, both at school and at home, as Tony has grown older and stronger.
“My wife could not take him. If he got mad at her, she would be on the ground screaming with him pulling her hair,” Graglia said, adding that they were worried for their younger son’s safety, too. “I couldn’t leave the house, unless the one male caregiver we had was there. I was essentially homebound.”
Rita Gardner has worked in the industry for decades and knows how difficult this process can be for families. She’s the president and CEO of Melmark, a human service provider that operates private special education schools in several states. Spots are hard to come by, she said, because students at programs like Melmark’s don’t graduate at the same rate as traditional schools. One family was on Melmark’s wait list for seven years before a spot opened up, she said.
“As a parent, none of us likes to see a time when our children don’t do well, right? Well, imagine that being every day, all day long, when you can’t access the resources to help your child be successful,” Gardner said. “It’s devastating.”
Charlotte’s school district recommended residential after years of back and forth with her parents on Charlotte’s individualized education program, or IEP, a legal document that outlines accommodations and learning goals for students with disabilities. Charlotte does not have a designated one-on-one aide at school, her parents said. She is in a school community-based program with other special needs students, which they said offers little inclusion with non-special education students.
Charlotte isn’t likely to ever learn to read or solve math problems, her parents said. But she wants to be engaged and could work toward basic life skills like toilet training and emotional regulation − both of which a school for students with disabilities can focus on. Montgomery County Public Schools declined to comment on Charlotte’s IEP or school placement journey due to FERPA restrictions.
Some parents forced to make tough, heartbreaking decisions
Neither Charlotte’s nor Tony’s parents wanted their children to go away for school so young. Both told USA TODAY they tried to find private day programs near their homes, but couldn’t find sustainable spots at those facilities, either.
“One after another, after another, after another, all said no,” Graglia said. He eventually found a special needs day school for Tony, but that school asked him to leave after about a year due to aggressive behaviors.
In the interim, Tony didn’t have a school to go to.
“He needs routine and structure and clear expectations. And, you know, we are not trained medical, psychological professionals. We’re parents,” Tony’s mother, Ashley Evans, said. “We love him. We want the best for him. And, we both have full-time jobs. It was challenging.”
After several months at home, Graglia said he and his wife hired a consultant to see which district-approved schools they could try. “She gave us a list of six schools in the entire country that she said could handle Tony,” he said.
The closest was in Kansas.
Luckily, the psychiatric residential treatment facility and special education school in Kansas had a spot open, and Tony started attending in April 2026. While Graglia said Tony is making progress, it’s difficult to send his 12-year-old off to a school 1,800 miles from home.
Graglia dropped Tony off at the residential program in early August for the new school year. It broke his heart, he said, to leave his son there while Tony begged to come home.
“Not only do I not have people in place right now to bring you home,” Graglia told him, “but I don’t have a school to send you to.”
Caregiver shortage impacts families of children with disabilities
With Charlotte, the main priority is safety, said Jasmin Pritchett, Charlotte’s speech language pathologist of four years. Because Charlotte tries to put most objects in her mouth, she needs constant supervision.
So, until her parents can find a residential option, they’ll need to continue providing around-the-clock care, which is also difficult to find. Quality home health aides are hard to come by, Hartman said. When Charlotte’s long-time caregiver moved away in the fall of 2025, she said, it was “a total nightmare.”
“We interviewed, like, 50 people,” she said. “So many people would not change diapers on an almost 10-year-old. You know, they didn’t want to deal with it. It was too much. We had some people start and quit. Some people we had to let go. We finally found Hathaway.”
Hathaway Packard, 23, started working with Charlotte in November 2025. She picks Charlotte up from school and watches her in the evenings. Charlotte likes school, she said, and is “always in a good mood” when she picks her up. But Packard also knows how challenging Charlotte’s behaviors can be when she doesn’t get her way.
“The first couple of times I was like, I don’t know if I can do this,” Packard said. But she realized over time why Charlotte acts out. “Imagine being frustrated that someone isn’t listening to you, but you can’t verbally say, ‘Hey, this is where I’m struggling’ or ‘I need help with something.'”
Charlotte “connects really well with people,” and Pritchett said she’s seen slow progress in Charlotte’s behavior over the years. Repetition and routine is key for kids like Charlotte, she said, noting how the rotation of caregivers was difficult on Charlotte and her whole family last fall.
“I feel like a residential placement for her will help with a little more consistency,” Pritchett said.
Packard said she, too, thinks it could be better for Charlotte to be at a school designed for students with special needs, that can offer one-on-one instruction to work on life skills, like how to use a fork. She’s picked up on the stress this search has caused Charlotte’s parents.
“Sometimes I wish there was more that I could do,” she said. “It’s hard to watch. I sympathize with them because my mom went through a similar situation with my sister (with disabilities), just making sure she was thoroughly educated. Trying to find a good school for people with intellectual disabilities as a parent is very difficult.”
The personal care aide shortage is another reason why some residential facilities can’t take children like Charlotte. In at least one of Charlotte’s rejection letters, reviewed by USA TODAY, the residential school cited “limited staff resources,” and an inability to “meet her behavioral and staffing needs throughout the day across all settings.” They encouraged Charlotte’s parents to keep in touch in case an opening becomes available in the future.
That’s typical, Lange-Gleise said. “We’ll get rejected and they’re basically like, try to get re-referred in four months.”
‘She’s not going to grow up’
Some parents in similar situations opt for homeschooling and work to staff their homes 24/7. That wouldn’t be ideal for Charlotte, her parents said, because she loves school, being around people and getting out of the house.
“She would be depressed if she were just sitting at home with caretakers,” Lange-Gleise said.
Hartman and Lange-Gleise are hesitant to look at residential schools outside of the Northeast, for now. Even if Charlotte goes to a school out of state, her family can’t move to be near her. They need to reside in Montgomery County Public Schools’ bounds to remain eligible for her IEP, since the public school would pay for Charlotte’s private school fees. Residential schools like Melmark don’t accept out-of-pocket payment from families, anyway. Students can only enroll via referral, Gardner said.
In the midst of this search, another worry floats on the horizon of Hartman’s mind: What happens after Charlotte ages out of school programs? She’s heard other states have shorter wait lists for adult services, but if her family moves now, Hartman said, they’ll have to start over with a new IEP at a new public school district. And then, she said, how long might it take to find a school that can meet her needs?
And what about Charlotte’s future, Hartman wonders, when her parents are no longer there to advocate for her best interests?
“I just want to know, if we’re no longer here, that she is going to be cared for,” Hartman said, adding that “she’s not going to grow up,” developmentally. “She needs to be part of a community that’s appropriate for her.”
Tony’s parents have similar fears about the future. They’ve not gotten the support they needed to raise Tony, Evans said, and supports are even harder to come by for adults with disabilities. And for people with SYNGAP1, Graglia said, “as they get bigger, the seizures do get worse.”
“My wife and I are definitely going to die first,” he said, adding that his 8-year-old son already “knows he’s taking care of his brother for the rest of his life.”
“It’s like an ongoing heartbreak and a perpetual problem that everyone in our community faces,” he said.
It’s one of the biggest pitfalls of care in the United States, Gardner said: it’s siloed. Instead of approaching care as one system from birth to death, each program at every stage of life − from early intervention, to preschool, to primary school, to secondary school, to adult life and one’s elderly years − is licensed and funded differently. And the earlier children with disabilities find the right placement, the better likelihood they’ll have to gain some form of independence.
“The ripple effect of not providing good early education and care is that as a society, we’re paying for that as caretaking needs that are much more intense in adult services,” Gardner said.
For now, Tony’s parents are focused on keeping him at the residential school in Kansas until the end of the 2026-27 school year. Hopefully, he’ll continue to improve his behaviors, Graglia said, and then they can revisit conversations with schools closer to home.
“We do not lack for (financial) resources,” he said. “And this is the best we can do. It’s a failure of the special ed system. The few places that can take kids like this are completely overburdened.”
Madeline Mitchell’s role covering women and the caregiving economy at USA TODAY is supported by a partnership with Pivotal and Journalism Funding Partners. Funders do not provide editorial input.
Reach Madeline at memitchell@usatoday.com and @maddiemitch_ on X.