Last week, Sen. Patty Murray (D-WA) and Rep. Bobby Scott (D-VA) introduced the Child Care for Working Families Act, which is intended to improve affordability, access, and quality for child care in the United States. Along with a proposal being floated by Sen. Elizabeth Warren (D-MA), it’s opening up a much-needed conversation about child care in America that will hopefully extend far beyond this legislation.
One of the most exciting elements of the bill is its explicit callouts of disability, acknowledging the fact that 17 percent of children in America have disabilities and need child care too — but can face barriers to inclusion.
The United States is facing a dual problem of scarcity and unaffordability when it comes to child care. 83 percent of parents with children under age five report difficulty locating affordable child care of sufficient quality in their area. Challenges with paying for child care or finding a suitable provider are pulling parents out of the workforce or leading some people to reconsider parenting altogether.
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Common threads in Warren’s Universal Child Care and Murray and Scott’s Early Learning Act and the Child Care for Working Families Act include increasing compensation for child care providers; making child care free or low-cost, depending on income; and investing in quality improvements across the board. But Murray and Scott’s bill is comprehensive and inclusive: It extends services beyond child care centers and into homes and communities, addresses care from birth through age 13 for all children and up to age 18 for disabled children, and invests in full-day, full-year programming to accommodate parents with varying schedules and those who need child care services in the summer.
The disability inclusion in Murray and Scott’s bill — which includes funding for activities such as making sure facilities getting government money are accessible and providing training to staff so they can better serve disabled kids and their parents — builds on the work of the Americans with Disabilities Act and the Individuals with Disabilities Education Act. It positions such funding as a routine part of meeting quality standards — something society tends to view as “special treatment” or a “burden.” Everyone in America deserves access to child care that meets the needs of their children, and that includes disabled children, who can be excluded by inaccessible facilities, poorly trained staff, and other barriers.
As long as child care is under discussion, though, it is worth addressing the fact that disability isn’t an issue limited to children and while these bills are an excellent start, we should also be looking to the future. Disabled children grow up and build families of their own — 6.2 percent of parents are disabled, and disability is more common in black and brown parents — and those families, in turn, will need access to child care. Sometimes that means care for disabled children of disabled adults, and sometimes it’s care for nondisabled children of disabled adults.
“You really need [child care providers] to be on your team,” explained Dr. Kara Ayers, Associate Director at the University of Cincinnati Center for Excellence in Developmental Disabilities. Ayers is the co-founder of the Disabled Parenting Project, which studies the experiences of parents with disabilities. As part of her research, she said she sees issues like inaccessible restrooms and “just one step” entrances — doorways where a single step is all that lies between wheelchair users and entry — are common at the facilities she visits.
Mandated reporters, people legally required to report possible abuse and neglect to the authorities, may have limited experience with disabled parents. Attitudes about disability may lead mandated reporters to be concerned about disabled parents’ capability. This is an issue with doctors, social workers, and teachers, and Dr. Ayers has found that it can appear in child care as well, an issue that raises personal concerns. “If I come in and these people are weirded out,” Ayers added, “one person could decide my daughter is not safe with me and one call could start that process.”
Ayers speaks to a looming worry in the disability community: In every state, it is legal to weigh parental disability when making determinations about whether to remove a child from a home, on the argument that the parent must be “unfit.” According to a 2012 National Council on Disability study, removal rates climb as high as 80 percent in cases of intellectually disabled or mentally ill parents involved in custody fights.
Disabled parents, said Ayers, worry about admitting that they need help or having to explain that services and supports are not a good fit for them, and that hooks directly into the child care conversation — if disabled people are nervous about communicating their needs, it’s challenging to make necessary recommendations.
Comprehensive access to child care, whether accomplished legislatively or through rulemaking, must be inclusive of disabled parents. For example, funds for increasing accessibility could also be used for continuing education classes to familiarize child care providers with the disability community. For disabled parents, adaptive parenting classes – which teach people how to navigate parenting with a disability with tips on topics like handling a baby while using a wheelchair and using braille-embossed flashcards to teach sighted children to read – could be made more readily available for expecting or newly-disabled parents through expanded funding.
Likewise, parenting equipment should be made more readily available and affordable through existing systems that already connect disabled people with adaptive tools that help them lead independent lives, such as independent living centers, community programs for new parents of all ability levels, Medicaid, and occupational therapy programs.
The United States should also consider what constitutes “activities of daily living,” the tasks that personal assistants can provide for their clients, currently defined by the Centers for Medicare and Medicaid Services using a model followed by many private insurance providers. The agency’s current definition includes things such as toileting, preparing meals, cleaning, and a wide range of other activities — but most parents would argue they should include parenting, too.
A government-funded personal care assistant “cannot do anything for child care,” said Keith Jones, president of Soul Touchin’ experiences, a community empowerment and policy advocacy group. Jones learned to change diapers with his feet as a new parent worried about being deemed unfit, and commented that it’s ludicrous to ask a personal assistant to “just ignore” a child who clearly needs attention.
As it stands now, Ayers explained, aides may not be allowed to help disabled parents, depending on the terms of their contract. If a baby is crying for attention, they can’t pick them up for a cuddle. If a parent needs help getting a child into a high chair for a meal, they can’t ask their aide for an assist. Explicitly including parenting as an ADL, says Ayers, could help disabled parents and kids alike — and it’s possible to have safeguards for those worried about parents abusing their aides as child care providers. A regulatory change initiated by CMS could be the most effective way to address this shortcoming.
The growing understanding that child care must be a part of progressive movements is heartening to see, and it’s encouraging that lawmakers like Murray and Scott are exploring disability issues as they develop new policy. Including disability from the start in ambitious proposals like these makes it easier to build on them, creating more equity and justice for the disability community.