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Bobbi Linskens’ daughter was 6 months old when she was diagnosed with a brain injury associated with learning disabilities and developmental delays. Soon, other diagnoses followed for the infant, who had been born 5 weeks premature, including cortical visual impairment, which affects the brain’s ability to process visuals and, later, autism.
Linskens, who lives in Pennsylvania, had worked in child care settings and had little faith that a typical program would be able to care for her daughter. When she toured a preschool program and asked how they would adapt their program for her daughter, who needed uncluttered spaces and high-contrast materials to see better, Linskens wasn’t satisfied with the answers. “I’ve never felt comfortable with the options that were available,” Linskens said.
Instead, Linskens juggled a full-time job while also caring for her daughter, bringing her along to meetings and work trips, and relying on television to keep her occupied. But that took a toll. “I was constantly feeling guilty because having her sit in front of a TV,” Linskens said. “I’m working and not feeling like I’m giving either job the attention that it deserves. It was a struggle.”
Over the past few years, the pandemic has illuminated the fragility of the child care industry and the massive challenges parents have finding child care, a reality that has only become worse with major staffing shortages and pandemic-related center closures. But for parents of children with disabilities, child care shortages have always been a reality. In many cases, parents like Linskens can’t find programs that offer the support their children need — many parents report being turned away from child care programs once program officials learn that their child has a disability.
Since fears about the pandemic have dissipated, these child care challenges have only worsened for parents of children with disabilities , experts say, as child care centers reach the end of pandemic-related relief funds and struggle to find staff.
“The amount of care available has diminished,” said Nina Perez, early childhood national campaign director at MomsRising, an advocacy group focused on issues relating to moms, women and families. “If you’re operating on the margins, it’s incredibly difficult to be inclusive without an infusion of public funds or without charging [more],” she said. “It’s less likely you’ll have services for those kiddos.”
Families of kids with disabilities who do find slots often find their children expelled or “counseled out” of school if they are deemed too disruptive — one out of six autistic children are expelled from preschool of childcare, according to a recent study published by the Exceptional Children research journal.
“Most parents bounce around from preschool to preschool hoping that they don’t get thrown out,” said Lina Acosta Sandaal, a Florida-based psychotherapist who works with parents in need of one-on-one or group parenting support. “What happens when [a child] get thrown out of that preschool is now we can’t practice what we need to practice so they’re ready for kindergarten,” she added. Kids “get labeled and that label stays with them.”
This reality has consequences for parents as well. Caregivers of children with disabilities are less likely to be employed, are more likely to turn down promotions and lose an average of $18,000 per year due to scaling back work hours or leaving jobs because they can’t find child care.
In Chicago, Danielle Jordan, director of Educare Chicago, said she often gets calls from families who have been “counseled out of other child care,” due to their children’s disabilities, even though the Americans with Disabilities Act stipulates that children with disabilities should never be turned away from most public or private child care programs because of their disability or the assistance they may need.
Educare Chicago, which is overseen by the nonprofit Start Early and runs several Early Head Start and Head Start classrooms on the city’s South Side, prioritizes inclusive education. More than 20 percent of children in its program have disabilities. The program has “inclusion aides” working in classrooms as well as a disability supervisor dedicated to making sure children with disabilities receive necessary therapies and support. But Educare has also been affected by staffing shortages, which have been especially pronounced for special education positions, including the aides who work one-on-one with children.
“They are the lowest paid teachers, and provide one-on-one around the clock supervision and care, which is definitely needed,” Jordan said. During the pandemic, Educare’s developmental play therapist left to start a private practice, an added blow to the program. Without enough staff available to help them, many children with disabilities are now languishing on a wait list. “We don’t have the support staff to make sure this is the best environment for them,” Jordan said.
If parents can’t find a child care center that will enroll their child with a disability, there are often few options. Under federal law, states are required to offer services like speech and occupational therapy to qualifying infants, toddlers and preschoolers, and some states go further and offer public preschool programs specifically for children with disabilities. Federally-funded Head Start and Early Head Start programs are required to fill at least 10 percent of their spots with children with disabilities, but nationwide, access varies and the program only enrolls a small percentage of eligible children. Some private programs specifically prioritize serving children with disabilities in an inclusive setting, but with limited spots, wait lists can be lengthy. Other options, like hiring a nanny, can cost an average of nearly $700 for a 40-hour week.
Part of the problem is that infants and toddlers with disabilities are not entitled to care and education like older children, said Perez of MomsRising. “It’s not perfect in the public school system, but we do know that children have federally protected rights,” she said. Greater federal investment in the nation’s child care system could help, she added. Last month, President Joseph Biden signed an executive order aimed at supporting the child care workforce and increasing access to affordable, high-quality care, including for children with disabilities, but it will likely take time for the directives to achieve results.
For Linskens, some relief came last year when her now 4-year-old was accepted into a preschool program for students with disabilities — a program the state covers under its early intervention program. But the program, which offers occupational, physical and speech therapy, is more than an hour’s drive away from Linskens’ home. For several months, Linskens drove her daughter to and from school until she was able to find a transportation company, also paid for by the state, to help. Since enrolling, her daughter has flourished, Linskens said. The child’s sleep has improved now that she is “engaged in something all day.” She used to cry when approached by other children, but now she is more comfortable and even seeks out interaction with friends, Linskens said. She’s also become more proficient with a device she uses to communicate and asserts her wants and needs.
Still, said Linsken, families like hers “just need more programs with more professionals for kids with special needs.” While she could have enrolled her daughter in other child care programs, with fewer supports for children with disabilities, she knows it wouldn’t have been the best option. “She would just get lost, she would go along with the flow, but she wouldn’t be getting what she needs.”
This story about child care for children with disabilities was produced by The Hechinger Report, a nonprofit, independent news organization focused on inequality and innovation in education. Sign up for Hechinger’s newsletter.