Home care workers in Illinois stand for dignity, independence, justice

I am a mother, a caregiver and a proud union member. I will not allow the Supreme Court to take away my voice.

Some 47 years ago, I gave birth to my wonderful son, Kenneth.  He has cerebral palsy, and caring for him has been a 24-hour-a-day, 7-day-a-week job.

I help my son with bathing, getting dressed, using the restroom and eating at our home in on the south side of Chicago. I do his laundry every day. When he wants to go outside, I go with him. I help him with exercise to strengthen his legs, hands and muscles. I do everything I can to help him be independent and live with dignity.

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For the last 15 years, I’ve been Kenneth’s personal care assistant, which means that the state of Illinois pays me wages for a certain number of hours of the care I provide. This program saves the state millions of dollars because it allows people like my son to live at home instead of being placed in more expensive institutionalized settings. But here’s what it means for me: I am able to feed our family and create a safe, accessible home for my son.

Being Kenneth’s personal care assistant also means that I’m a member of SEIU Healthcare Illinois—a union I worked to build and to which I am deeply committed. The opinion issued by the U.S. Supreme Court this week in the Harris v. Quinn case may alter how the system works, but it doesn’t take away our union and it doesn’t take away our power.

Before we had a union, personal care assistants in Illinois were paid as little as $1 an hour. Most home care workers were, and are, women like me.  We found ourselves in the position of caregiver through love or family or a little bit of both. We received no benefits and no training. It was no surprise that personal care assistants didn’t stay in the field—how could anyone afford to on a dollar an hour? This left consumers without stable reliable care. We were invisible and so were the people we cared for.

Forming a union changed all that. We organized and won through collective bargaining a wage increase up to $7 an hour. Over the years, we’ve won other raises and in December, we’ll be making $13 an hour. We have health insurance and paid training. We can take better care of the people who need it, all while saving the state of Illinois $600 million a year by keeping people at home and out of institutions.

Personal care assistants aren’t the only ones whose lived have changed. With higher wages and better benefits, turnover has gone down among the workforce. In turn, consumers can rely on care providers who aren’t forced to look elsewhere for jobs to support our families.

Each day, more than 25,000 home care workers serve more than 30,000 Illinoisans with disabilities. We keep families and communities together.

There’s no ignoring the future for people who do what I do, or for American taxpayers, because 10,000 people turn 65 every day. Our country will need an 1.5 million more home care workers by 2020 to meet the needs of an aging population and the hundreds of thousands of people of all ages whose dignity and independence we can prioritize by enabling them to live at home instead of in an institution.

The demand for home care is exploding—it’s the fastest growing job in America—but the system can’t work for everyone unless consumers and workers are valued. Families can’t afford to get the care they need and workers can’t afford to provide it.

I lived through the civil rights movement and saw firsthand what it means when people stand up, speak with one voice and fight for change.

I started my own fight for change—to bring power to home care workers—by organizing with my fellow care providers.  No court case will stop home care workers from sticking together, organizing and standing up for good jobs and quality care for our consumers.

Home care workers play an essential role in the lives of tens of thousands of people in this state and we become more essential each year as the number of consumers we serve grows. We will not let anyone take away our power.

Johnson is a home care provider from Chicago and chair of the executive board of SEIU Healthcare Illinois.

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