Modesto caregiver fights for better system in California | Opinion
My son, Manny, is the reason I get up every morning determined to fight for people with disabilities. At age 24, Manny lives with autism and is nonverbal. I’m his voice.
There are thousands of Mannys in California who count on someone to care for them so they can live with the rights we all want and deserve. The right to be in our own homes, rather than a nursing home, if we choose. The right to be cared for by our families and stay in our communities.
In California, the In-Home Supportive Services program anchors these rights for people with low incomes who have disabilities or who are elderly and need support with daily living. Once held up as a national model, the program is now in grave danger of failing the people who count on it most.
Underpaid and undervalued for years, caregivers are leaving the program to find jobs that will pay the bills. The result is a crisis-level shortage of care providers across the state. A full-blown catastrophe is on the horizon if California doesn’t strengthen the caregiving workforce before more Baby Boomers reach the point of needing care in their elder years.
A 2021 report from California’s state auditor found more than 40,000 elderly Californians and people with disabilities who needed IHSS care didn’t get it each month in 2019. Here in Stanislaus County, 679 people couldn’t access their care monthly. And that was before the COVID-19 pandemic, inflation and burnout forced more caregivers out of the workforce.
It breaks my heart that many people like Manny are losing out on the care they need to be safe, to deliver their medication, to help them dress or use the bathroom. In Stanislaus County, providing intimate care for a human being like my son pays less than $1 above the minimum wage, and in the vast majority of counties pay is less than $2 above the minimum.
I know Manny is worth far more, and I’ll keep doing this work as long as my body lets me. But I understand why so many caregivers are leaving the program: it’s impossible to live on near-minimum wages in a state as expensive as California.
County by county, caregivers negotiate through our union over wages and benefits, but since most of the program is paid for at the state level, it’s impossible with this structure to make caregiving recognized as a valuable career or make the system stronger for people who need it. To transform the system, we are joining together with caregivers across the state and Assemblymember Matt Haney (D-San Francisco) on AB 1672, legislation that would give us a seat at the table with California’s governor to negotiate for statewide improvements to IHSS.
It’s frightening to think of Manny or anyone’s child going without the care they need. And I know that parents and loved ones and other caregivers make a difference when we make our voices heard.
Recently my union stepped up to protect people like Manny who live with autism when they have interactions with police. I spent countless hours walking the halls of the state Capitol to tell Manny’s story and that of other people with autism whose lack of speech or behaviors might be misinterpreted by police, leading to violent or deadly outcomes. Our advocacy helped pass the “Manny Alert Act,” a law that will help educate and train first responders and create better alert systems and tools to protect these vulnerable members of our communities.
Manny’s spirit and resilience inspire me and everyone who meets him, and I know that the care I give him is a big part of what helps him thrive. Now I’m asking our legislators to listen to people like me who provide critical care and give us a voice in shaping the system kids like mine count upon.
Astrid Zuniga is vice president of United Domestic Workers. She lives in Modesto where she cares for her adult son, Manuel.
