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Navigating America’s child care system is already an exercise in absurdity — wait lists, short-staffed facilities, and of course, the ever-rising costs. That’s reality, no matter who you are.

Families who have children with disabilities, however, encounter all of those same hurdles and then some. Caregiving for children with disabilities often means fewer options, and fewer options means higher costs (on top of the already steep costs of child care in America). The end result? These families are forced to manage child care with the difficulty level turned up even more — typically without much support, relief, or even any acknowledgement of what they’re up against.

This edition of The First Word is dedicated to changing that. Let’s talk about the struggles these families face, get real about the shifting landscape, and offer up some clear ideas on what needs to change.

And, if you’re caring for a child with disabilities, take a moment to share your story with us.
 

SHARE YOUR STORY


 
Take Everything You Know About Parenting. Now Raise the Difficulty Level.

This is among our most requested topics for a deep-dive treatment, for good reason.

Parents of kids with disabilities are constantly overlooked when it comes to the national conversation on child care. Because it’s a crisis for everyone, we sometimes tend to forget that the families who have the most demanding caregiving responsibilities are navigating an even tougher situation. They need — and deserve — to be seen and supported.

Let’s start with a harsh truth: The child care crisis in America doesn’t affect all of us the same. Yes, the system is broken, full stop. But broken systems hurt some families more than others. And a recent report by the Center for American Progress lays out several ways this crisis disproportionately disadvantages children with disabilities.

It’s estimated that half the country lives in “child care deserts,” where the number of kids under five dramatically eclipses the number of available child care spots. Here’s the problem: That stat doesn’t take into account the fact that not every available slot is accessible to children with disabilities, who often need specialized care.

Thanks to dwindling budgets, many child care facilities are already having trouble retaining their most experienced staff, a problem that compounds when it comes to early childhood special education teachers. As a result, more than one-third of families with disabled children reported having difficulty finding care.

The ripple effects are clear-cut. We already know that when parents can’t find adequate, affordable child care, their participation in the workforce suffers. They take more unpaid leave and even consider leaving their jobs altogether. It’s no wonder the CAP report found that parents with disabled children are three times more likely to experience job disruptions due to child care issues.

And let’s be real: When we talk about parents leaving their careers behind, we’re usually talking about moms. Women make up two-thirds of our nation’s caregivers — yet they tend to drop out of the workforce at rates three times higher than men.

Budget Cuts with Real Consequences

The systems that are failing these families are already strained. And sadly, we’re about to find out what happens when their budgets get cut. Of the 19 million children with special health care needs in America, about 40% rely on Medicaid or the Children’s Health Insurance Program for care. 

In the budget just passed by Congress, those two programs alone saw their funding cut by $1 trillion over the next decade. The Congressional Budget Office estimates that as many as 10 million people could lose coverage altogether. Worse, these cuts are expected to hit hardest in rural areas, where disabilities are more prevalent.

Without key funding for care programs, most states will be forced to cut back on home- and community-based care services, and potentially reduce access to special health care needs at school. And because Medicaid coverage now includes minimum work requirements for the first time, that throws a wrench into our fragile caregiving infrastructure — many current recipients who are caregivers will be forced to go without coverage or forgo their caregiving responsibilities. 

If these families were truly seen and heard, do you really think our leaders would let this happen?

You and I know that parenting is already hard. The parents of kids with disabilities, just like any of us, are out there doing their best — trying to do right by their kids, assembling patchwork solutions to get them the needed care and support, and yes, often daring to have a career to support their families. And they’re doing all of this within a broken caregiving system where their families too often get left behind, and where the little support they get from the government is getting slashed. You don’t need a formal study to know that the mental health load is intense (but know that studies do exist).

The Toll of Invisible Care

The other day, USA Today published an alarming story that puts so much of this in perspective: “Nearly half of parents with disabled kids report suicidal thoughts, but can’t find help.” The Centers for Disease Control and Prevention found that this group report the highest rates of suicidal ideation in the country, the result of financial, logistical, and emotional strains piling up. As one mom in the article put it, “Sometimes being a mom means that your needs come last.”

Yeah, that sounds familiar. And Moms First exists to change that — not the deep love that drives you to put your kids first, but the outdated belief that moms have to lose themselves in the process.

That’s why we’re here, and that’s exactly what we’re setting out to do by shining a light on this subject this week. Now, let’s talk about what we can do about it.

 
First and foremost, if you or someone you know is struggling or in crisis, there is help available at 988lifeline.org.

There are several helpful resources worth knowing about, particularly around respite care designed to give family caregivers temporarily relief from their responsibilities — for starters:

  • ARCH Respite Network, which offers a detailed guide to respite care and a locator searchable by state and condition
  • ACL Lifespan Respite Program, a federal initiative coordinating systems for short-term relief care
  • Care.com which details several types of care (including respite care) in addition to finding providers and funding options
  • Read more about respite care at the National Academy for State Health Policy, including Medicaid-covered models for kids with special health needs 

Share Your Story

The number of personal stories we read from moms like you helped us decide to go deep on this subject this week.

We need to create an environment where leaders can’t keep putting this crisis, or our families’ needs, on the backburner. The best way to do that, as we’ve learned again and again, is to show up and tell our stories.

SHARE YOUR STORY

To all of the parents and caregivers of children with disabilities: We see you. And we’re going to keep fighting — until every parent and caregiver, no matter their child’s needs, has the care, support, and dignity they deserve.

 
With you,
Reshma Saujani