Cathyleen Williams of Barstow, California, shuddered as she listened to the claims agent from the state’s unemployment insurance program.
Williams wouldn’t be getting unemployment benefits, the agent said. Family members paid by the state’s In-Home Supportive Services program to care for children with disabilities, spouses caring for spouses, and children younger than 18 caring for parents didn’t get unemployment benefits if the person they cared for died, the agent explained.
Williams, a single mother, couldn’t believe what she was hearing. For almost a decade, she’d relied on the full-time, minimum wage from the In-Home program to care for her son, Caleb, who had a rare birth defect called hypoplastic left heart syndrome and needed round-the-clock attention. How was she going to immediately find a job while dealing with the loss of her child?
“I was floored, devastated,” says Williams, whose son died of complications from influenza in 2016, at age 9. “I thought, in the midst of your grief, you shouldn’t have to worry about how you’re financially going to take care of yourself.”
Williams did find a job five months after Caleb died, and was able to stabilize her finances. But the desperation she felt in the wake of his death after realizing she had no unemployment safety net to fall back on, set her on a quest to prevent other family caregivers in the In-Home program from suffering the same fate. This week that quest appeared to be nearing an end, as a bill to extend unemployment compensation to family caregivers enrolled in the In-Home program and a similar one called Waiver Personal Care Services, headed to Gov. Gavin Newsom’s desk.
“I feel very hopeful,” says Williams, who has worked tirelessly to advocate for the bill, called Assembly Bill 1993.
Given the high rate of unemployment amid the COVID-19 pandemic, the bill is needed more than ever, she explains.
“It’s going to be catastrophic for these parents” if the bill doesn’t pass, she adds. “With (more than) a million people on unemployment and no jobs to really be found, how are we going to take care of them? What are they going to do?”
If signed into law, AB-1993 is expected to extend unemployment eligibility to more than 119,000 family caregivers, who are primarily low-income women of color, according to the home care workers union United Domestic Workers of America/AFSCME Local 3930. Supporters say that’s only fair, given that people employed as in-home caregivers who are not family members do receive unemployment benefits if they lose their job.
According to Assemblymember Sydney Kamlager (D-Los Angeles), who introduced the bill, the current policy of excluding family caregivers from receiving benefits is the product of outdated, discriminatory attitudes toward women.
“Most parent and spouse in-home supportive service providers are wives and mothers,” Kamlager writes, in a statement. “They’re excluded from receiving unemployment because domestic labor has always been seen as ‘less than’ because mostly women do it. As we rebuild California’s post-pandemic economy, we need to eliminate sexism and racism from the fabric of our society and guarantee equity to all workers.”
The estimated cost to the state of extending eligibility is about $14 million annually, according to an analysis of the bill from the state legislature. The final bill garnered unanimous support in the state Assembly, and Senate. Gov. Newsom has until Sept. 30 to sign it.
Backers of the bill, including the home care workers union United Domestic Workers of America/AFSCME Local 3930, say it will help stabilize the in-home caregiver workforce, which is heavily reliant on family members because of a shortage of other workers available to do the job. The goal of the In-Home program is also to keep low-income children with disabilities and the elderly in their homes, generally a more comfortable choice for families, and less costly to the state than paying for a residential care facility.
Mirna Ruiz, a Rialto single mother of two children with disabilities, says she thinks the bill is overdue. Ruiz has relied on the In-Home program for 12 years, after being forced to quit her job as an insurance writer to care for her now 24-year-old son with a heart condition, seizure disorder, and mild cerebral palsy. She also has an 18-year-old daughter who is deaf and required surgery and auditory verbal therapy as a child.
Even with the In-Home payments, Ruiz, 48, says she had to move in with her mother to make ends meet. If she were to lose that support, she wouldn’t be able to afford basic necessities, she explains.
She and other caregivers “literally dedicate our lives to our kids,” she says, and adds that to not have a financial cushion after the loss of a child would be devastating.
Williams knows that feeling. She now runs her own nonprofit, helping provide support and guidance to families of children with disabilities. She’s heard from many parents over the years that have felt the financial impact after their child died and they stopped receiving In-Home support. Some lost houses, cars, and other possessions as a result.
Grieving is “all you should have to worry about when your baby dies,” Williams says.
This story was produced in partnership with the California Health Report.
Claudia Boyd-Barrett is a longtime journalist based in southern California. She writes on topics related to health care, social justice, and maternal and child well-being. Her investigative stories on access to mental health care have resulted in legislative and policy changes.