Editor’s note: This story appeared in the opening issue of this week’s Early Childhood newsletter, which delivers early childhood education trends and top stories free to subscribers’ inboxes every other Wednesday.
Bobby Linskens’ daughter was six months old when she was diagnosed with a brain injury that left her with learning disabilities and developmental delays. Born five weeks premature, the infant soon received other diagnoses: cortical visual disorder, which affects the brain’s ability to process vision, and later, autism.
Linskens, who lives in Pennsylvania, had worked in child care and didn’t believe she could support her daughter in a typical program. When she toured one preschool program and asked how it would be adapted to accommodate her daughter’s need for uncluttered spaces and high-contrast materials to improve her eyesight, Linskens wasn’t satisfied with the answer. “I was never satisfied with the options available,” Linskens said.
Instead, Linskens juggled full-time work with caring for her daughter, taking her to meetings and business trips, and keeping her busy with TV. But it was taking its toll. “I always felt guilty about sitting my daughter in front of the TV,” Linskens says. “I was working, but I didn’t feel like I was giving either job the attention they deserved. It was a struggle.”
Over the past few years, the pandemic has highlighted the fragility of the child care industry and the enormous challenges parents face finding child care. Severe staffing shortages and pandemic-related facility closures have only exacerbated this reality. But for parents of children with disabilities, the child care shortage has always been a reality. Often, parents like Linskens are unable to find programs that offer the supports their children need. Many parents report being turned away from child care programs once program personnel learned their child has a disability.
These child care challenges have only worsened for parents of children with disabilities since fears of the pandemic faded, experts say, as child care centers have run out of pandemic relief funds and struggled to retain staff.
“The amount of care available is declining,” said Nina Perez, early childhood national campaign director for MomsRising, an advocacy group focused on issues related to mothers, women and families. “When you’re operating on the margins, it’s very hard to become comprehensive without an infusion of public funds or fee collection. [more]”You’re less likely to get services for those kids,” she said.
When families of children with disabilities find spaces available, they often expel their children or “counseling expulsion” them if they are deemed too disruptive. A recent study published in the research journal Exceptional Children found that one in six children with autism has been expelled from preschool or daycare.
“Most parents bounce from preschool to preschool to avoid being kicked out,” says Lina Acosta Sandal, a Florida-based psychotherapist who works with parents who need individual or group parenting support. [a child] “When they’re pushed out of kindergarten, they don’t get the practice they need to be kindergarten-ready,” she added. “They get labeled, and that label sticks with them.”
This reality also affects parents: Parents of children with disabilities are less likely to be hired, more likely to turn down promotions, and lose an average of $18,000 per year by reducing their hours or quitting jobs because they can’t find child care.
Danielle Jordan, director of Educare Chicago, said she frequently gets calls from families who say their child’s disability “rejected them from other child care options that were recommended to them,” even though the Americans with Disabilities Act says children with disabilities cannot be turned away from most public or private child care programs because of their disability or the supports they need.
Educare Chicago, which operates several Early Head Start and Head Start classrooms on Chicago’s south side and is overseen by the nonprofit Start Early, prioritizes inclusive education. More than 20 percent of the children who attend the program have disabilities. The program has “inclusion aides” who work in the classrooms and a dedicated disability manager to ensure children with disabilities get the treatment and support they need. But Educare also struggles with staffing shortages, especially in special education positions, including aides who work one-on-one with children.
“They’re some of the lowest paid teachers and they provide around-the-clock, one-on-one supervision and care, which is absolutely necessary,” Jordan said. The program was hit further by the departure of Educare’s developmental play therapist to go into private practice during the pandemic. With a lack of staff to help them, many children with disabilities are on waiting lists and languishing. “They don’t have the support staff to ensure this is the best environment for them,” Jordan said.
When parents are unable to find child care that accommodates their children with disabilities, they often have few options. Federal law requires states to provide services such as speech and occupational therapy to qualifying infants, toddlers, and preschoolers, and some states go further by offering public preschool programs specifically for children with disabilities. Federally funded Head Start and Early Head Start programs are required to fill at least 10% of their spots with children with disabilities, but access is uneven across the country, with only a small percentage of eligible children enrolled in the programs. Some private programs prioritize serving children with disabilities, especially in inclusive settings, but limited space can result in long waiting lists. Other options, such as hiring a nanny, can cost an average of about $700 for 40 hours a week.
Part of the problem is that infants and toddlers with disabilities don’t have the same rights to care and education as older children, said Mums Rising’s Perez. “The public school system is not perfect, but we know that children have rights that are federally protected,” she said. Increasing 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 child care workers and increasing access to affordable, quality child care, including for children with disabilities, but the order is likely to take time to bear fruit.
Linskens found some relief last year when her now 4-year-old daughter was accepted into a preschool program for students with disabilities. The program is covered by the state’s early intervention program. But the program, which offers occupational, physical and speech therapy, is more than an hour’s drive from Linskens’ home. For several months, Linskens drove her daughter to and from school, eventually finding a transportation company that the state would pay for. Linskens said her daughter has thrived since enrolling her. Her sleep has also improved because she is “engaged all day.” Linskens said she used to cry when other children approached her, but now she is more at ease and seeks out peer interaction. Linskens said her daughter has also become better at using the devices they use to communicate and is more assertive about her wants and needs.
Still, Linsken said families like hers “need more specialized programs for kids with special needs.” She could have enrolled her daughter in other child care programs that offered less support for kids with disabilities, but she knows that wouldn’t have been the best choice. “She would have just been lost, she would have gone with the flow, and she wouldn’t have gotten what she needed.”
This article about child care for children with disabilities was produced by The Hechinger Report, a nonprofit, independent news organization focused on education inequality and innovation. Sign up for the Hechinger newsletter.
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