With your support, Direct Care Alliance has been the national advocacy voice of direct care workers for almost ten years. We can all be proud of what we have accomplished together.
Inspired by the vision of former Executive Director Leonila Vega, we built a nationwide advocacy network of direct care workers through the Voices Institute and other means. These worker leaders are eloquent about the value of their work and have a passion for improving our system of long-term services and supports.
We influenced legislation and regulation, taking important steps at the state and federal level to improve the health and economic security of direct care workers, invest in the workforce and enhance training and advancement opportunities. A key recent victory was the final home care rule extending basic labor protections–including federal minimum wage and overtime pay–to home care workers nationwide.
We developed a national credentialing program that is an important step toward building recognition of personal care work. We assisted many direct care workers in finding health insurance under the Affordable Care Act. We also provided technical and financial assistance to direct care worker state associations.
Unfortunately, the world has changed, and our income has decreased every year. The board has grappled with this over the years, trying to trim costs while maintaining services and supports for workers, but we don’t have enough funding to continue operating. We regretfully inform you that DCA staff operations will cease and our offices in Washington, DC and New York will close by June 30. Continue reading »
Our offices closed and our staff stopped working on June 30, 2014. The board is operating a “virtual office” to respond to members through October 20. Our communications consultant is also staying on part-time to maintain our website, blog and social media.
Finding grant funding has became more and more challenging in recent years, and our income has been steadily decreasing. The board has been trimming costs where it could, but we arrived at a point at which things were no longer sustainable.
What will DCA do between now and October 20?
The board is exploring possible partnerships with other organizations in hopes of finding a new home for our members and allies. If you know of a group that might be interested in partnering with us, please let us know. Continue reading »
If you talk to direct care workers about what they do for a living, you will discover within the first five minutes of your conversation that they are proud of the care they provide. Talk to them a little longer and you will probably also hear how conflicted they are about their work, largely because of how underappreciated and disrespected it is by the rest of us.
Growing up I can vividly recall my mother, a 30-year career CNA (now retired), exemplifying that dichotomy when she spoke to me and my brothers about her work. While she certainly enjoyed the care side of direct care work, I could hear the disappointment in her voice when she talked about how the work she and fellow direct care workers provided was rarely appreciated or talked about with respect by others within the nursing home and VA hospital she worked at. Continue reading »
I’ve been covering the world of long-term care for almost 20 years now, focusing for more than half that time on direct care workers, so I’ve thought a lot about the many traits—including competence, compassion, reliability, attentiveness and patience—that make good direct care workers so good at their work. But not until my own mom became a “total care” nursing home resident did I learn to appreciate what I now think is the most important trait of all.
A massive stroke at the end of 2012 left Mom with severe expressive aphasia. She can usually understand what is said to her and knows what she wants to say in response, but she can rarely get out the words she needs to make herself understood. She’s come a long way, after months of speech therapy, but for every time she can say the right word or short phrase there are many more when she can only get out a string of unconnected words.
Watching people react to Mom has taught me a lot about how our words define us. Continue reading »
Watch Respect: The Joy of Aides, a wonderful 20-minute documentary by Eva Sweeney, a woman with CP, about how to hire and manage aides and what it’s like when a direct care worker and a client work well together.
The following is an edited excerpt from a journal I kept in October 2004 about life as a home care worker in Augusta, Maine.
Two days ago, I pulled the ligament under my kneecap at a client’s home, catching my foot on a plastic rug. Then my car started to make “dentist drill” noises and my mechanics told me I needed to replace the pulleys on the alternator. I squeezed another 12 miles onto the odometer before I felt a change in the power steering, letting me know the alternator wasn’t doing its job. Welcome to the home care worker’s biggest nightmare: Lack of wheels!
I reflected on my need for transportation as I took a taxi to work yesterday. Basically, my car is used for business transportation. “Drive to work, work to drive,” as a friend used to say. To save money, I do all my errands on my way home from an elder’s house. Of the thousands of miles on my old car, I have probably logged about a thousand traveling for pleasure, usually to see family and friends. The rest were all spent driving to and from my clients’ homes. Continue reading »
Direct care work, in one sense, made me feel like a rock star. When a stranger asked me what I did for a living, and I said, “I work in a facility for emotionally troubled teenagers,” the response was often: “Wow, that’s so great.” No other job I’ve ever done—and I’ve sampled dozens—has ever netted me such a consistent response.
And the job was great, for all the reasons these strangers guessed. It was important work that pulled my heart and soul and body into the huge effort required each day. It was clear as I started a shift at the residential center that I would be challenged and that I would have the chance to help young people in crisis.
I think part of the awed response to these direct care positions comes from the urge that everyone has to do meaningful work. Many people have jobs that don’t feel meaningful to them, and those people fantasize about leaving a position to make a difference. Most people respect a job where, at the end of the day, you can clearly point to a crisis you helped solve or a person in pain who you helped comfort.
It’s mysterious and tragic that the respect we have on a one-to-one basis for meaningful jobs doesn’t translate to respect for an industry or a whole category of employees: the group of direct care workers.
The lack of respect results in things like low wages and stressful working conditions.
Have you ever done a happy dance? Well I don’t dance, but I did a happy dance when I completed the enrollment process for health insurance through the new health care marketplace. It was frustrating at times, but the frustration was worth it because I finally have health insurance again!
I have had to deal with a lot of stress in the past in keeping my family insured through Badger Care, Wisconsin’s Medicaid program, as the children got older or the rules changed. I’ve also had my own struggles with maintaining health care coverage. For many years as a home care worker I qualified for Badger Care. Then I got a raise and was making $50 a month too much to qualify, so I had to switch to my employer’s insurance plan. That lasted for years, but I lost that insurance in November 2011 when the home care agency I work for stopped offering insurance because it was too expensive.
I went without health insurance for two and a half years after that. There were several times during that period when I should have seen a doctor but did not because I couldn’t afford it. Continue reading »
“That was so compelling.” “How can I learn more?” “How powerful!”
That was some of the feedback I received from the people who approached me following a May 8 briefing on Capitol Hill. The Washington, D.C. briefing was hosted by OWL–The Voice of Midlife and Older Women, to observe the release of its annual Mother’s Day report. The focus of this year’s report is long-term care, services and supports (LTSS), including growing demand, challenges, and opportunities for improvement, and I had been asked to talk about how direct care workers fit into that picture. My co-panelists highlighted key considerations including how best to meet the needs of older adults and people with disabilities, the challenges facing family caregivers, financing, and the lack of a political will for change. I spoke about the critical role played by direct care workers and how best to strengthen and support the direct care workforce to meet the growing demand for high-quality care and support.
When I spoke, there were gasps from the audience at the size and anticipated growth of the workforce, the percentage of women in the profession, and the low wages and high rate of dependence on public assistance among direct care workers. We are so familiar with these facts and figures that we sometimes forget how shocking they are to people who are new to them, but reactions at the briefing proved that we were reaching new people, teaching them about the urgency and importance of direct care workforce issues, and inspiring them to take action. Continue reading »
This Wednesday, Direct Care Alliance, Eldercare Workforce Alliance and the National Consumer Voice for Quality Long-Term Care hosted an Older Americans Month tweetchat on how to support older adults’ independence, safety and health. Here are highlights from the chat, including links to moving testimonials, useful resources, and tips about how you can help.
May is Older Americans Month, traditionally a time to recognize older adults’ contributions to the United States. But if we genuinely want to use this May to give back to the parents, grandparents and other elders who have done so much for us, we must turn our attention to the direct care workers who help millions of older adults live as healthily and independently as possible. We must stop shortchanging elders by turning our backs on the direct care workers they depend on.
Read the rest of my editorial in The Hill’s Congress blog.
Deborah Little is the chair of the Sociology department at Adelphi University. Her chapter in Caring on the Clock, a book on direct care work that is due out this fall from Rutgers, looks at DCA’s work to support and empower direct care worker advocates. She recently talked to DCA’s Elise Nakhnikian about what strategies are most effective and why.
Voices Institute students at work with an instructor (far left).
What got you interested in this topic?
I was hired by DCA to do an evaluation of the pilot senior CNA project that started three years ago. As part of that, Leonila [Vega] invited me to attend a national Voices Institute in Wisconsin, because five participants from the senior CNA project attended that year. At the Voices Institute, I got very interested in the organizing and empowerment work that DCA was doing. I took extensive field notes during the Voices Institute, and spent a lot of time speaking with participants in informal interviews. After that, I expanded my research to look at the DCA blog and the literature on organizing direct care workers.
What got me interested in this topic was a moment that I talk about at the beginning of the paper, where one of the workers at the Voices Institute was willing to give up a wage increase because she thought it would be difficult for her clients to afford the extra cost. I thought, how can this be? How can she not readily see the connection between the quality of her job and the quality of the care she is giving? And how can she be so willing to sacrifice her own needs and the needs of her family? Continue reading »
Dorothy Lee is a home health aide living in New York City who signed up for health insurance under the Affordable Care Act (ACA, also known as Obamacare), with the help of our Get Direct Care Workers Covered initiative.
I’ve been working for an agency here in New York for three years. Before that, I worked at a Ritz-Carlton in Florida. When I moved here I wanted to switch to working with the elderly. I like working with people, and when my grandmother was old I didn’t get to give her any attention. It feels good to be able to help other people’s grandparents.
When I worked at the hotel I had insurance through Aetna, but I started going without insurance soon after I started doing home health care. At first I had Medicaid through Health Plus, but they took it away because I was earning too much. They said I have to make less than $700 a month to get back on Medicaid. Continue reading »
An Older Americans Month toolkit from Eldercare Workforce Alliance helps journalists and other stakeholders find publications, programs, and personal stories that focus on the health and safety of older Americans from EWA member organizations—including DCA.
“Home care services are among the most important work there is, and if we want it to be done well, dedicated home care workers should be compensated at a level that reflects their commitment and skills,” says an editorial in Maine’s Portland Press-Herald.
An excellent new publication from Center for Law and Social Policy explains a crucial but often overlooked part of compensation: direct care workers and other low-income workers are far less likely to get paid leave than higher-wage workers. The brief describes recent and pending laws and policies aimed at leveling the paid time off playing field.