Working motherhood is even harder if your child has a disability

The lost income and opportunities last a lifetime.

“Everyone needs care. What we need now is for society to value caregiving, as well as the people who provide that care.” — Caitlyn Collins

I’m racing down the freeway at 1:59 p.m. with my heart in my throat.

The sheer number of balls I am trying to keep in the air takes my breath away.

I have 11 minutes until I have to be home to greet my twins coming off their school bus. Because they ride the special education bus, I must be present when they get home.

One problem: I am nowhere near my house.

This is a typical Tuesday in 2015 when I worked as a newspaper reporter. I have proofread the front page, waved goodbye to my coworkers and raced down the stairs to my car. 

“This is unsustainable,” a voice in my head says as I watch the needle hover just below 65 mph. “You can’t juggle all these balls. Your body can’t take this much stress.”

I push on the gas. 

*

You may have heard of this struggle before. Many articles and books outline the sheer impossibility of modern American women to “have it all” — a successful work-family balance. 

There is cause for hope. In Making Motherhood Work, sociologist Caitlyn Collins lays out a compelling case for how public policy could help with that balance. In her interviews with dozens of women from four different countries, she shows how mothers’ stress levels and ability to hold on to a job are dramatically different in countries with better family leave and public childcare programs.

“Raising children well is in a country’s collective best interest,” Collins writes in her 2019 book. “And yet US society leaves parents, mostly mothers, on their own to accomplish this herculean goal that benefits everyone.”

Unfortunately, this problem becomes even more pronounced for mothers of disabled children. 

Even when I was working full time, I couldn’t afford the childcare I needed — I made less per hour than a nanny would to care for two neurotypical kids. 

Two disabled kids? Forget about it. Qualified private babysitters for disabled kids are rare and expensive. 

As it was, I “splurged” for no-school-day daycare at the one place in my town that would willingly take a 5-year-old wheelchair user still in diapers and another who climbed fences and acted out.

(The law in my state is that all daycares have to be “willing” to take disabled kids… but would you really leave your child with someone you had to force by law?) 

My state, Oregon, does offer a Medicaid waiver program that will pay for an in-home caregiver. Although the program is a lifesaver, it is not to be confused with childcare. In-home caregivers aren’t allowed to work while the parents are away; to care for any other children; to do any tasks not directly related to the additional care needs of the child client; to be working during school hours; nor to have their low government wages supplemented by any parents with the ability to do so.

And then there’s the fact that I’ve gone through multiple promising hires who simply never show up to work.

This is not just a problem for people with lower incomes. A friend of mine is a registered nurse. Instead of performing the similar medical and care tasks for her disabled daughter, Lisa Ledson could make good money performing them for strangers. But the volume of care coordination her daughter requires means she has had to drastically reduce her hours. Ledson calculates she has missed out on about $60,000 a year in income since her twins were born. It is an economic hit she didn’t have to take when her neurotypical son was born 14 years earlier. 

“I have calculated the hours I’ve spent over the past 26 days on (my daughter’s) IEP, medical insurance, equipment ordering, appointments, DME coordination and medications,” she texted me the other day, using acronyms for the school district’s Individual Education Plan process and for Durable Medical Equipment suppliers. “I have logged, on average, 7.15 hours per day. Where do we find time for anything else? WTF?”

In fact, we can’t. And there’s a body of scientific evidence to show we are not alone. 

“Care needs of children with severe disabilities are significantly greater than those of non-disabled children and do not decrease with advancing age,” reads this 2001 study from the U.K. “Mothers of children with disabilities are unable to work outside the home because of these care needs. This brings the family income, even when benefits are included, to a level that is less than peer families with non-disabled children.”

In this 2014 study, researchers found that parents typically spent about 33 additional hours per week caring for disabled children.

This review of studies from 1989 to 2005 concluded the financial, physical and mental toll of caring for disabled children was “substantial.” 

“…in order to meet their child's needs, families who care for a child with a disability are more likely to be single income families with lower quality jobs yielding lower incomes, to live in poor quality housing, and to live in poverty,” researchers found. “…Moreover, parents of a disabled child require more time off work and are more likely to work reduced hours and to decline overtime.”

This is a phenomenon the world over.

UNICEF just released a report highlighting that the poverty gap between people with and without disabilities exceeded 20 percent in most countries. This was due to the expense of their care but also to the indirect costs of them and their family members being unable to work.  

“If family members of a person with disabilities are employed, the type and extent of work they can do might be limited. Caring for a family member for only a few hours a day can preclude paid work, depending on the flexibility of scheduling,” reads the 2021 report.

This has long-term impacts to the economic success of people with disabilities, and their families of origin.

As one mama of a 16-year-old told me: “It’s been heartbreaking to watch other families get stronger financially, parents of teens getting freedom, and I’m still struggling.”

*

I pull onto my street and there it is: The small yellow bus pulling up to my curb, a quarter of a mile away. 

I made it! I’m coming! I yell at my kids in my mind. I know how intolerable waiting is for them. The ambulatory twin is probably out of his seat already, against the rules. The driver won’t open the bus door until he sees me, for fear that my son will run off. And the district doesn’t allow the driver to unstrap my other twin’s wheelchair.

If I’m too late, the bus will leave. They will complete their 45-minute route and then deliver my kids back to the school building for me to pick them up. My children do not take changes to their routine well and would surely scream the whole way. I can’t imagine how traumatized they (and the bus driver) would be by the end of that. 

I pull into my driveway and leap out of the car to wave at the driver.

I made it.

But, somehow, I still feel like I can’t breathe. 


I made the difficult decision to stop most paid work in 2019. But I do this because studying and writing about this subject gives me life. I also have some time, education and privilege to write — a luxury that so many women I see in similar situations do not have. I feel I owe it to them, and to society at large, to point a light into these largely unseen corners.

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What I’m reading this week

A round-up of news for parents of disabled children.

• From NPR: Obamacare Survives Latest Supreme Court Challenge

Many of the provisions of the ACA are now taken for granted. Up to 135 million people are covered by the ban on discrimination against those with preexisting conditions.

Young adults are now permitted to stay on their parents' insurance until age 26; copays are not permitted for preventive care; and insurance companies can no longer put lifetime caps on benefits, are required to spend 80% of premiums on medical coverage and are barred from discrimination based on factors like gender.

In addition, Medicaid coverage was greatly expanded after all but a dozen states took advantage of the ACA to expand federally subsidized coverage under the program.

• From The Oregonian/OregonLive via Disability Scoop: State Scrambles For Solutions As Major Disability Services Provider Plans Exit

Mentor Oregon, which is a local branch of The Mentor Network, said it is leaving due to outside factors, including insufficient staff to provide the best possible care….

The U.S. Senate Finance Committee investigated the company’s operations in Iowa and Oregon, publishing its findings in December. The investigation was triggered in part by a 2019 article in The Oregonian/OregonLive that described neglect at a Mentor home in Curry County that was so severe, staff told abuse investigators that the home smelled of “rotting flesh,” according to official records.

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