The New Caregiving Movement

With Medicare and Medicaid on the chopping block at the state and federal levels, the crisis for seniors and people with disabilities is becoming as urgent as the crisis facing the workers who are caring for them.

By Tiffany Williams

Marie rushed into my office last year, panting and apologizing for being late for her appointment to work on her resume. She's a professional caregiver whose career has spanned professions, including housekeeper, preschool teacher, nanny, and home health aide.

She was unhappy with her working conditions at the home health agency, but couldn't quit because of the financial stability she needed to raise her young daughter. She was often late, not because she couldn't manage her time, but because she was overscheduled and couldn't leave the elderly clients without proper coverage. Soon after I helped her with the resume, Marie needed a lawyer because her paycheck was often days or even weeks late, and sometimes didn't account for all her hours.

I work with nannies and housekeepers who have survived severe exploitation and human trafficking. Once they recover, many seek home health care jobs, believing that line of work will lead them out of poverty and into the middle class. Marie's situation illustrates why that's unlikely.

In addition to poor working conditions, unstable pay, and the lack of respect that are endemic to the care industry as a whole, care workers also face a unique legal barrier to obtaining just working conditions. The Fair Labor Standards Act's "companionship exemption" leaves workers who provide direct care services without access to minimum wage and overtime protection because they're considered "companions" to the elderly and disabled. However, most of these workers provide vital hands-on assistance by managing their clients' medication and hygiene as well as preparing and serving their clients' meals.

The Labor Department is working to remedy this problem by establishing a rule that would narrow this unfair exemption that frequently leads to worker exploitation. The Direct Care Job Quality Improvement Act, a bill Sen. Robert Casey (D-PA) and Rep. Linda Sanchez (D-CA) introduced in June, would also help. It would extend overtime and minimum wage protections to care-giving workers, and improve care quality by providing grants to states to train workers who would be more likely to stick with this understaffed industry.

Raising paid caregivers' labor standards alone, however, would only mark a small step toward solving the nation's care crisis. Experts expect the number of Americans requiring long-term care and support services to grow from 13 million in 2000 to 27 million in 2050. With the current long-term care workforce encompassing approximately 3 million workers, today's crisis is sure to deepen as the population ages.

With benefits and services under Medicare and Medicaid on the chopping block at the state and federal levels, the crisis for seniors and people with disabilities is becoming as urgent as the crisis facing the workers, such as home health aides, who are caring for them.

But by addressing both sides of the caregiving relationship — including unpaid family and friends serving as caregivers — there's an opportunity to affirm shared values and find solutions that can address the needs of all.

A broad alliance of community organizations, worker rights groups, immigrant rights advocates, senior coalitions, and disability advocacy groups have launched the Caring Across Generations campaign to address this crisis. We're working together to transform and improve the direct care industry for everyone — workers, family caregivers, individuals with disabilities, seniors, parents, and young people.

We'll hold our first national Care Congress in Washington, DC, on July 12, where we will be joined by Labor Secretary Hilda Solis and other government and elected officials. Regional care congresses in Seattle, San Antonio, and other cities will follow so that communities can grow and develop grassroots campaigns that address local needs within the larger national vision.

These public conferences will provide an opportunity to share personal stories about this crisis, to learn more about the issues facing workers, seniors, and people with disabilities, and to collaborate in finding solutions.

As a member of the campaign's leadership team, I invite you to check out the Caring Across Generations website and register for a Care Congress in your community.

Marie is still working as a home health aide. I hope that this national movement will eventually enable her and others to earn a decent living with a stable, rewarding career path. She's with a different agency now, but as before works long, unpredictable hours, and earns only enough to pay rent and put food on the table.