When Bethany Sizemore’s baby, Carter, was 1 month old, he suffered a spontaneous subdural hematoma, a condition where a buildup of blood gathers on the surface of the brain. He was rushed to the pediatric intensive care unit at the Children’s Hospital of Richmond, where doctors labored to save him.
Carter survived, but the experience took its toll on his little body.
“He is such a blessing. But since then, he’s had no use of his left arm,” his mother, Sizemore, said. “He has global developmental delays. He’s speech delayed.”
When Sizemore, who lives in Hanover County, started looking for child care options, she couldn’t find any day cares that would take him.
“I would say, ‘He’s special needs.’ And their whole tone would change. They would say, ‘We don’t have the space,’” Sizemore said. “We never found one day care – whether it was in-home or a commercial day care – to support his needs.”
Parents of children with disabilities face many obstacles in accessing adequate child care and the COVID-19 pandemic has only made it worse.
Roughly 39% of parents of young children with disabilities had difficulty finding child care in 2019, compared to 29% of parents of children without disabilities, based on data from the National Center for Education Statistics.
Nearly 1 in 5 parents of young children with disabilities reported leaving a job, not taking a job, or making significant changes to their job due to child care, according to a new report from the Center for American Progress.
In 2019, children living in poverty were more likely to have a disability – 6.5% – than children living above the poverty threshold at 3.8%.
The pandemic exacerbated these obstacles when day cares closed during the shutdown, spaces became limited and worries about exposure affected in-home care.
Children with disabilities make up roughly 15% of the population of children in the U.S.
Child care programs are not allowed to exclude children with disabilities under the Americans With Disabilities Act. But there are exceptions, such as if the child poses a direct threat to others, or if providing an accommodation would pose an undue hardship on the provider, or fundamentally alter the nature of the program – leaving many children with disabilities excluded.
Ame Branam of Midlothian has two children: Warren, 8, who has Down syndrome, and Natalie, 7, who has autism. Both children struggled in day care.
“It was really, really rough. At one day care, the kids were making fun of Natalie, calling her dumb. She would retaliate by spitting on them. This was a completely new behavior for her and she brought it home for a while,” Branam said. She also received calls from the day care about her son trying to escape, she said.
Autism can be detected in children by age 2 but many, especially girls, do not receive a final diagnosis until much older, according to the Centers for Disease Control and Prevention. This leaves parents in a lurch when their children are displaying challenging behaviors but no one knows why. It can take up to a year in some cases to get a diagnosis with long waiting lists for adequate providers.
After being kicked out of several day cares when Natalie was 3, Branam sought a diagnosis. It took three different tries with three different companies, but, finally, they received the diagnosis that Natalie had autism.
“It helped us tremendously in learning what was going on and why she was so stressed,” Branam said. But once they had that diagnosis, Branam was told by the preschool that if she wanted her daughter to continue to attend, Branam would need to hire a full-time caregiver to accompany her.
“Paying for day care on top of a full-time caregiver was not an option for us,” Branam said. In Virginia, the average annual cost to have a child Natalie’s age in day care is around $11,500, with monthly bills around $900 to $1,000.
Branam looked for more day cares. At the beginning of the pandemic, Natalie was just settling into her new day care while Warren was kicked out of his. Both ended up at home with their parents during the lockdown.
“I can’t blame anybody,” Branam said. “The whole child care system in this country [is problematic]. There’s high turnover; staff aren’t paid a living wage. There aren’t enough staff to give kids attention. The staff gets little to no training on working with neurodivergent children. I would love to point my finger at somebody, but I just can’t.”
Finding support for young children with disabilities is a challenge.
Janee Lambert and her mother, Dorothy Shears-Billups, have been looking for child care for Lambert’s daughter, Harmoni, 5, who has autism, for over a year.
“The options are limited,” Shears-Billups said. She works with ChildSavers, a local nonprofit that provides children’s mental health services and child care resources. “Early care is hard when you don’t have teachers familiar with the needs of the children. They struggle handling the behaviors. It’s more a lack of training. There needs to be more focused training to deal with children with special needs.”
Lambert and her mother found a center-based program for Harmoni, but are taking a wait-and-see approach, knowing that they might need to pivot if Harmoni’s behaviors can’t be supported.
There are options for parents of children with disabilities, although navigating the system can be cumbersome and difficult. Some parents work through their insurance to find early intervention services and applied behavior analysis, or ABA, therapy through companies such as Building Blocks, which is locally owned.
These services provide early intervention and the kind of skill building that children with disabilities need to succeed – such as working on social skills, communication and strategies for managing difficult behaviors.
The Leaf Spring School offers nursery school, preschool and pre-K that welcomes children with special needs.
The Faison Center of Richmond, which is a private school and center for children with autism, has an early education program for ages 15 months to 5 years old, but it is not a child care program.
“The early education center is specifically for children from the moment they get diagnosed until they enter school age,” Adam Warman, vice president for the center, said. It offers early intervention services for children with autism, such as ABA therapy, inclusive and play-based teaching methods, and social skills instruction. They have two campuses in Richmond, with roughly 30 children, ages 2 to 6, in attendance.
The Infant & Toddler Connection of Virginia also offers an early intervention system for infants and toddlers, ages 0 to 36 months, with disabilities.
Christine Ciarlo has a 5-year-old son, Gabriel, who has autism. He was diagnosed by VCU Medical Center when he was 3 years old.
Her son has high-functioning autism, which means he doesn’t qualify to go to a specialty autism program, but he also doesn’t qualify to be in a traditional preschool program.
He struggled at private preschool and wasn’t allowed to return the second year.
“He’s in the middle. Nobody knows what to do or how to work with him. You’re stuck basically,” Ciarlo said.
Ciarlo found the Infant and Toddler Connection of Chesterfield, which helped Gabriel get into a special needs pre-Kindergarten program at Crestwood Elementary School in Chesterfield County.
“By the grace of God he got in,” Ciarlo said. “I don’t know what I would have done otherwise.”
Now at age 5, he’ll be entering kindergarten in Hanover public schools with an individualized education program. And he still gets ABA therapy every week.
“You want your child to have an education and support. They’re kind of lost. No one knows anything. You’re grasping at straws, Googling, hoping that you’re making the right decision. That was the hardest part. There is no road map,” Ciarlo said.
There are several groups willing to provide training to day cares and schools, such as through the Autism Society of Central Virginia.
But because these processes aren’t streamlined or coordinated for parents of children with disabilities, parents often find themselves alone – searching the internet, trying to figure out the best course of action to find care or support for their child. Many look to hire caregivers on their own through Care.com.
Jamie Serrecchia of Hanover and her son, Levi, who has autism, qualified for a Medicaid waver that provides for care or aides in the home. But the program is beset with problems, most noticeably that the reimbursement rate for care is so low – it is now $10.50 per hour – that finding adequate and appropriate care is extremely difficult.
During COVID, Serrecchia had to worry about who to bring into her home. Her son has two different immune disorders and is at higher risk of developing complications from COVID. She had to ask herself if it was worth the risk. Other parents couldn’t find caregivers willing to enter their houses during the height of the pandemic and lost child care.
Serrecchia estimates that she has hired over 20 attendants through the Medicaid waiver program. It still wasn’t enough.
She lost her job at the state health department because she was getting called out so often to pick up her son from school.
As a single parent and the sole provider, losing her job was scary. Serrecchia now has a job where she works as a consultant with clients. She is able to set her own hours and can work around her son’s schedule, which has become more demanding as he’s gotten older.
Levi, now 12, has struggled so much at school that Serrecchia has decided to reschedule her workload so she can work from home entirely and home-school Levi.
“He’s doing so much better. School was a very bad situation for him. But now he’s thriving and doing awesome,” she said.
Ann Rasmussen of Powhatan County has a 9-year-old son, Philip, with a severe seizure disorder and secondary diagnoses of autism and attention deficit hyperactivity disorder.
Finding child care for him was so difficult when he was little that by the time he was 2 years old, Rasmussen, who had been working for a nonprofit, left the workforce entirely. Their family qualified for a waiver that allowed for help to come into their home. But, Rasmussen said, “It’s a full-time job, just finding the help and training the help.”
Federal funding for child care has remained largely stagnant over the past 15 years. After adjusting for inflation, today’s per-child funding for young children with disabilities is between one-half and one-third what it was 25 years ago, according to a report from the Center for American Progress. Parents of young children with disabilities would benefit from more funding for early childhood programs covered by the Individuals with Disabilities Education Act.
“Our culture is not designed to support families with disabled children,” Rasmussen said. Like many parents of children with disabilities, her struggle with child care is just the beginning of a lifetime of care.
“Child care issues do not end … when kids [with disabilities] enter school,” she said. “Out-of-school care is just as difficult, and as kids continue to age and develop, care issues become more complicated.”