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After giving birth to premature twins, one of whom had a disability, Alexis began the search for child care. She called daycare providers repeatedly to try to get spots for her children. She found it was nearly impossible to find a center with two spots for infants, let alone one who had a disability. Her partner, who worked night shifts, ended up watching the twins during the day for a full year so Alexis could work. Even as Alexis’ children became toddlers, her options remained limited: she had to rule out any centers that did not have elevators or ground floor access due to one twin’s physical disability. She was nervous and cautious of providers who she feared may not pay attention to that child, who also had limited speech. At night, she and her partner would get in bed and “cry because it was just hard.”

“Families of children with disabilities are really, really struggling.”

Alexis’ experience is all too common for parents of children ages 0 to 5-years-old who have disabilities, a demographic that makes up an estimated 15 percent of the country’s childhood population. According to a new report from the Center for American Progress, parents of young children with disabilities are more likely to experience difficulty finding child care, are less likely to secure a childcare spot and are more likely to experience job disruptions because of problems with child care. Cristina Novoa, the author of the report, interviewed Alexis and 16 other parents, whose last names were withheld for privacy, and analyzed two national datasets on disability and child care. Novoa found that while many parents struggle to find high-quality childcare, the problem is especially acute for the parents of children with disabilities. “They’re experiencing additional barriers…and they’re paying an additional price,” Novoa said. “That means families of children with disabilities are really, really struggling.”

The report found that 34 percent of parents of young children with disabilities had difficulty finding child care in 2016, compared to 25 percent of parents of children without disabilities, based on data from the National Center for Education Statistics. Often that is due to a lack of qualified caregivers, insufficient physical accommodations, and, in some cases, caregiver bias or disinterest in serving children with more complicated needs. In areas where child care options are already sparse, this can be crippling for parents. Thirty-four percent of parents of children with disabilities were unable to find child care in 2016, compared to 29 percent of parents with nondisabled children. Parents of children with disabilities are more likely to cobble together multiple arrangements to find care and are more likely to rely on relatives.

Thirty-four percent of parents of young children with disabilities had difficulty finding child care in 2016, compared to 25 percent of parents of children without disabilities. Source: National Center for Education Statistics

Several of the interviewed parents reported running out of parental leave and paid sick days and experiencing exhaustion and stress due to child care challenges. 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 childcare, compared to nearly 1 in 10 parents of young children overall. “These parents are so devoted and love their children so much and do not see their child as a burden,” Novoa said. But “they’re not supported. They are fighting so hard to get their kids included in these programs.”

To improve child care options for parents of all children, and especially for those who have children with disabilities, Novoa recommends the following policy changes:

  • Require states to expand child care that is inclusive, enrolling both children with and without disabilities, and provide more funding for those child care settings. Novoa said the federal Child Care for Working Families Act, a bill introduced by Sen. Patty Murray (D-WA) and Rep. Bobby Scott (D-VA), addresses these aspects of child care.
  • Increase pay for the early childcare workforce so centers are able to recruit and retain highly-qualified educators
  • Increase funding for the Individuals with Disabilities Education Act, or IDEA, which includes provisions for access to early childhood programs for children with disabilities.
  • Create more work-family policies that give parents flexibility and benefits to take care of children with disabilities or attend to those children during the day as needed.

Editor’s note: This story led off this week’s Early Childhood newsletter, which is delivered free to subscribers’ inboxes every other Wednesday with trends and top stories about early learning. Subscribe today!

This story about young 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.

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