Families with Disabilities Face Multiple Challenges Accessing Child Care

“We need more help: from a hardworking, loving, caring father. I am physically / emotionally broken down and I have no idea where to turn to.”

“I stay up until two in the morning looking for child care opportunities, writing to anyone and everyone. Sending emails to lawyers, sending emails to and leaving phone messages for the superintendent. This is our life.”

These are quotes from parents of children with disabilities interviewed by the U.S. Government Accountability Office (GAO) for its recent report on access to child care for families with disabilities. Access to affordable, high-quality early care and learning is inadequate in the U.S. in general, and is especially low for families of children with disabilities. Access has been particularly low since the COVID-19 pandemic, with pandemic relief funding ending and child care and special education staff shortages spiking. GAO conducted focus groups, interviews, surveys, and site visits with parents and child care providers across the U.S. to examine issues facing parents of children under age six with disabilities (about 2.2 million children) and parents who have disabilities themselves and have children under age six (about three million parents). Results make it clear that child care is not affordable, accessible, or high-quality for most of the millions of families with disabilities across the country.

The report finds that families have insufficient access to child care across the mixed delivery system, including community-based providers such as centers and family child care homes, school-based programs, and Head Start. There are not enough child care programs that are willing or able to serve children with disabilities, leaving families on waitlists sometimes for years. Families have difficulty finding nearby programs that enroll children with disabilities. (See this brief from New America’s New Practice Lab on how centralized enrollment systems could help). When programs are available, they are often far away or only provide part-day care, so parents endure long commutes and must patch together care from multiple providers and/or family members. Some parents have to decrease work hours or exit the workforce altogether. Compared with 53 percent of parents of children without disabilities who said their child care covers work hours very well, only 36 percent of parents of children with disabilities said so, according to the report.

“For every single service that we qualify for there are no service providers in the state that have availability. So even though now we could get speech therapy through the state’s public program, there's not a single provider in the city participating in the program, so we still have to pay out of pocket for speech therapy, physical therapy, occupational therapy. There’s like, maybe one place that has a wait list of two years. I’m like, no, we need to do speech therapy now, not in two years, so we’re just having to pay out of pocket.”

Parents reported difficulty accessing special education and related services to which their children have a right. For instance, some parents with concerns about their children’s growth requested developmental screenings for their children, but were denied. When they established eligibility for services like physical therapy, speech therapy, and occupational therapy, they faced long delays in getting started. This leads some parents to pay out of pocket, while others cannot afford to do so or go into debt. When families do have access to therapists, their children often can only receive services off-site during child care hours, rather than in the classroom, meaning that parents regularly have to transport their children to midday appointments. Some parents reported that this was due to providers not allowing these services to be provided in the child care setting.

Several parents who found child care placements learned that their children were excluded from academic and extracurricular activities due to inaccessible classrooms and playgrounds and lack of staff training. Parents reported cases of neglect and physical harm to their children, as well as suspension and expulsion for behaviors that could be related to their children’s disabilities. Providers noted facilities constraints that made it difficult to provide accessible entryways, toilets, and playgrounds, and lack of funding for making these spaces accessible. They reported a shortage of staff and inadequate access to specialists (e.g., speech and occupational therapists). They said they need more training to support children with challenging behaviors, dual language learners with disabilities, and children with disabilities who have trauma histories.

Parents with disabilities reported challenges in accessing programs, including not being able to physically enter their children’s classrooms. Providers cited a need for more training and resources on how to support and communicate with parents with disabilities. “Parents who themselves have disabilities are often overlooked in conversations about child care,” said Elizabeth Curda, Director of GAO’s Education, Workforce, and Income Security team, via email correspondence. “As we continue to have conversations about child care accessibility I encourage us to remember that parents are an important part of the equation. . . . if all parents are asked about their needs it can create a culture where parents with disabilities can have more open communication with their child care providers. This is better for kids, parents, and child care programs.”

GAO’s conclusions strike a hopeful note, in that its study found that many of the resources families and providers said they require already exist. There is a clear need for better outreach and awareness building of these resources, such as Parent Training and Information Centers (PTIs) and a webpage designed to help providers better engage with parents with disabilities. “While parents are the intended users of these [PTI] centers, child care providers knowing that these centers exist and referring parents to them could be a game changer,” says Curda. “Imagine HHS’s nationwide network of child care providers letting parents whose children are suspected of having a delay or disability know that there are professionals there to help them navigate the evaluation process, understand their rights, and get the supports the child is entitled to.” GAO recommends that the U.S. Department of Health and Human Services (HHS) and the U.S. Department of Education (ED) coordinate to better leverage these resources, and both agencies have agreed to these recommendations.

Ultimately, truly accessible, high-quality child care for families with disabilities will take better outreach and much more funding in the long-term for the robust, inclusive early care and learning that children and families deserve. Collaboration between HHS and ED is only a first step, Curda says. “Knowledge sharing and collaboration is powerful, but it isn’t everything. There are systemic challenges like a lack of child care availability and high costs that are already very difficult for families. For families with disabilities, these challenges are compounded. These systemic challenges require system-level solutions beyond collaboration.”

As one parent in the GAO report put it, “Access to child care for kids with disabilities is an equity issue for those of us that choose to or need to work to earn a living. It’s about equity for the kid, and also, for the parent to be able to participate in this life, and the world.”