Working motherhood is even harder when your child has a disability
The lost income and opportunities last a lifetime.
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 miles away from 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.
It doesn’t have to be this way. 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 here says 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, like me. A friend of mine is a registered nurse. Instead of performing medical and care tasks for her disabled daughter, Lisa Ledson could make good money performing them for strangers. But the amount 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.” It goes on to say that “…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. …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.
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A version of this essay ran in Medical Motherhood on June 20, 2021.
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From the Kansas Reflector: “Parents of disabled kids urge Kansas lawmakers to expand aid and fix issues with health care system”
TOPEKA — A Kansas mother struggling to balance treating her cancer with caring for her disabled children urged lawmakers Monday to provide more support for people like her.
Kathy Keck, a mother of five kids, three of whom have developmental and medical disabilities, said she left the workforce more than five years ago to care for her children. Now, with a mastectomy scheduled, Keck said she doesn’t know who will watch them while she is recovering.
According to Keck, her daughter’s full-time nurse covers 52 hour a week, and her husband, a full-time nurse, handles 40 hours of child care per week, leaving Keck in charge of her daughter for about 76 hours per week. Keck doesn’t know what to do for her six- to eight-week mastectomy recuperation period, where she won’t be able to do any heavy lifting.
“I too have concerns about another mastectomy, but the biggest cause of stress and anxiety is not knowing how I will care for two of my three disabled children/adults long enough to take care of my own medical needs and recover with the ongoing workforce crisis,” Keck said in testimony submitted to the Robert G. Bethell Joint Committee on Home and Community Based Services and KanCare Oversight.
Keck asked lawmakers at the meeting to address systemic issues by increasing medically necessary nursing care for children on the Technology Assisted Waiver, a Kansan waiver that provides people with services such as personalized medical care, and find ways to address the statewide shortage of qualified health care workers.
Keck said the KanCare system, the state-administered form of Medicaid in Kansas, needs to be fixed.
“What is happening in our system is a lot like cancer,” Keck said.
• From The 74 via Disability Scoop: “Lawsuit: Parents Say Special Education Cases Are Rigged Against Them”
Virginia’s courts routinely rule against parents of students with disabilities who sue to ensure their children are receiving an appropriate education, according to a class action lawsuit filed in federal court last week.
The suit names the Fairfax County Public Schools in northern Virginia as well as the state department of education, which trains and certifies hearing officers to review parent complaints. The suit alleges the state maintains a list of “school-friendly hearing officers” who are more likely to rule against families that challenge district decisions about services for their children.
Trevor and Vivian Chaplick, parents of a Fairfax student with autism, ADHD and other “profound” disabilities, along with a nonprofit they’ve created, filed the suit on behalf of all students in the state who participated in due process proceedings since 2010. Virginia state Superintendent Jillian Balow and Fairfax schools Superintendent Michelle Reid — last year’s national superintendent of the year — are also named as defendants.
“Due process is a parent’s recourse if something goes wrong,” said Callie Oettinger, a Fairfax parent who runs a watchdog websitedocumenting special education complaints in the district. “What happens is they lawyer up and they’ll spend millions fighting you.”
The lawsuit comes as parents across the state are seeking compensatory — or make-up — services due to school closures during the pandemic. Under the Individuals with Disabilities Education Act, districts are required to evaluate and provide services to students if educators failed to follow a child’s individualized education program, or IEP. But the lawsuit claims Virginia’s system was rigged against parents long before the pandemic.
• From The Washington Post: “A boy with cancer hoped to see monsters. Hundreds of strangers showed up in costume.”
Alexandros Hurdakis was less than a year old when his parents received a devastating diagnosis: Their baby had brain cancer.
It was the most harrowing news they could have imagined, until two weeks ago, when the Hurdakises were told there was nothing more doctors could do to save their son, now 5.
The treatments that kept him alive for the past four years were failing, doctors explained, and Alexandros — who goes by Alex — had only a few weeks, or perhaps even days, to live. Alex still wanted to fight the disease.
“He is the strongest person I’ve met,” said Alex’s father, Nick Hurdakis, 33, who lives with his wife, Kira, and their three children in Hamilton, Ontario.
Alex’s parents wanted to make his remaining time as meaningful as possible. They asked him if there was anything that he still wished to experience. His response: Halloween. Specifically, he wanted to see monsters.
[…]With the help of several community members, [family friend Paula] Tzouanakis Anderson was able to get in touch with local officials and block off the main road.
On the day of the event — Sept. 14 — Tzouanakis Anderson expected 300 people to attend, at most. But as the evening progressed, “probably close to 1,000 people showed up,” she said.
The Hurdakis family was floored.
“It was surprising and amazing,” said Hurdakis, who works in construction. “We never expected something like that. It was beautiful.”
Alex, for his part, “was very happy,” his father said. “He loved it.”
“It’s just an inherently touching story,” [volunteer Hayley] Trickett said. “I don’t think there are many people that wouldn’t want to try and achieve the wishes of a 5-year-old with a terminal illness.”
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