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Improving Elder Care and Jobs for Workers: Dialogue as a Starting Point for Action

Susan Charney and Barbara Young (NDWA) at Adhikaar in Queens in July 2013. Photo: Larissa Wohl.By 2030, one in five New Yorkers will be over 60 years old.1 The age wave created by increased life expectancy, combined with the impact of geographic dispersion of extended families and more women in the workforce, means our country is not adequately prepared to meet the needs of seniors. In 2012, the direct care workforce totaled just over 4 million workers; however, “an estimated 1.8 million more home-care workers will be needed during the next decade to serve the growing population of consumers.”2  BJ’s Aging in NY Hevra is on the front lines of responding to a problem that all of us will face as we age — the “care gap” and ensuring dignity for seniors and workers in New York City.

What does the “care gap” mean for the BJ community? Nearly half of the 1700 households members of BJ are 55 and older. Increasingly, we are grappling with questions related to aging: What will happen when I get older and need help? What kind of support network will we have in order to age in place, comfortably and with dignity? Many people are overwhelmed when it comes to figuring out how to plan for their own care, let alone arrange it in a moment of crisis.

In Spring 2011, the then newly formed Panim el Panim, Aging in NY Hevra faced these myriad concerns and did something bold and potentially transformative: We decided to build a local advocacy and organizing campaign to increase availability of quality elder home-care while also recognizing elder care workers’ needs.Debra Eder, Sandy Soffin, and Monica Brathwaite (DWU) role play an elder care scenario with guidance from Melanie Willingham-Jaggers (ALIGN) at Elder Care Dialogue in October 2013. Photo: Redpapillon Photography

The Aging in NY Hevra formed a partnership with three affiliates of the National Domestic Workers’ Alliance (NDWA): Damayan Migrant Workers Association, which represents Filipino workers; Adhikaar, a Nepali worker and community organization in Queens; and Domestic Workers United, an organization of Caribbean, Latina and African domestic workers. We were brought together by Jews for Racial and Economic Justice (JFREJ), which had built strong relationships with our organizations in the fight to pass the Domestic Workers Bill of Rights, which became law in 2010. In that campaign, JFREJ developed a proven track record of building solidarity between the domestic worker movement and Jewish communities.
Channa Camins, Nimfa Despiladeras (Damayan), Pema Sherpa (Adhikaar), and Roly sharing stories about elder care work with seniors at the end of life in December 2013. Photo Channa Camins.The elder care home care workforce is comprised of workers employed by two sectors: organizations or agencies generally paid through Medicaid and long-term care insurance (formal sector), and workers that work directly for individuals through private hire and pay (informal sector). In our Elder Care Survey conducted in Spring 2013, a majority of BJ members who responded said that home-care for themselves or their loved ones their loved ones was, is currently, or likely will be paid out of pocket. A significant portion of the community find elder care through private direct hire in the informal sector or anticipate doing so in the future.

Many workers in the informal care sector do not have access to high quality training or career advancement. This is due to cost, immigration status, language barriers, and an absence of uniform standards, among other challenges. The result is inadequacies in coordinated planning, workforce development, and support for seniors and workers. Furthermore, until a decision in 2013 by the U.S. Department of Labor (effective 2015), the highly undervalued and largely immigrant, female, low-income workforce was excluded from federal labor standards, such as overtime pay and minimum wage afforded to most other workers in the country. This is not a recipe for high quality, person-centered senior care.

“What I relate most to about the dialogues is the opportunity to converse ‘face to face’ with our partners of diverse backgrounds about complex issues — bringing our unique perspectives and our shared desire to connect.”

— Debra Eder, B’nai Jeshurun member

“When Damayan asked us to be allies and help them protest human trafficking…I wanted to be there to support them. But also, I think that as we show up for one another, we build strength and capacity through our reliance on one another…It is like if someone makes a call to me and says I really need you to show up to this thing, that relationship is important so I’ll go. The same is true for showing up [for each other’s issues] on a larger level.”
— Rochelle Friedlich, B’nai Jeshurun member

“You guys [workers] are the ones who do the caregiving. You have a really hard job. Because on the one hand, you are trying to satisfy the employer (me)… and you’re trying to help the patient who doesn’t want you around, wants to believe he or she can live independently. It is easy to fall into the trap of thinking that we are family, but we aren’t. With professionalism comes dignity on both sides. And the idea that we’re all family takes away those professional boundaries and those boundaries are really important. The patient is so dependent. The caregiver is doing the most intimate things in your home and yet somehow there’s supposed to be a professional distance. And so that’s a very difficult thing to navigate.”
— Toni Siegel, B’nai Jeshurun member

“I think working with elderly people, being as a worker, as a caregiver, we know that this is a job. But when they are hiring or firing, that time people don’t realize that they are doing that [with] the human beings. Working is on this side, money is on another side. I don’t know about other people, but I work with my feelings.”
— Pema Sherpa, member of Adhikaar

“I found the dialogue at Adhikaar to be a very powerful experience, listening to the stories of the workers, and the hardships they endured. I knew it too, on some level, from personal experience from when my parents needed home care. I saw the troubles that the woman that we hired had, considering her immigration status and things of that nature. But, to really hear several stories, being with a mix of people. All of us who went found it powerful and meaningful. So that was a very positive experience.”
— Freeman Shore, member of Central Synagogue

“ I really like the exercise, where we did this role playing in which the wife doesn’t want the worker to take the husband to the park because she’s sort of embarrassed by the way he ended up in a wheelchair and can’t really talk. And right away…I was like, oh my gosh, she’s so selfish…And then I had this conversation with one of the women who’s actually taking care of her husband who is terminally ill, and she was talking about the shock that she went through from seeing him healthy and totally self-sustaining to being…completely dependent on other people to take care of him…And it just shifted so much how I was reading the case study, you know? Because, I was like, she is in the way. And the woman [who shared with me], really allowed me to see how complex it is from the family’s perspective. I learned a lot about feeling compassion towards some of these families and not being so quick to judge. You know, why people act the way they do. Because I’ve never had that experience. I can’t imagine. So, it definitely developed that sense of solidarity, like real solidarity.”
— Yomara Velez, State Strategies Organizer, National Domestic Workers Alliance

New York City’s older adult population continues to grow, but our plans to address their age-related needs have not kept pace. “With increasing retirement insecurity and rising costs of care, moderate-income individuals who do not qualify for Medicaid… face major challenges accessing the care they need.”3   All communities, including B’nai Jeshurun, are affected. In 2006, the poverty rate among older New Yorkers (age 65+) was nearly twice the national average. Additionally, the number of seniors living in poverty nearly doubles if you take into consideration the cost of living in New York City. Low -income domestic workers are particularly vulnerable as they age if they are undocumented or if social security contributions are insufficient.

Freeman Shore (Central Synagogue and Manhattan Together) at Adhikaar in Queens in July 2014. Photo: Larissa Wohl.Finally, the relationship between an elder home-care worker and a consumer is at once deeply personal while also that of an employee and employer. The realities paint a complex picture as workers often struggle to subsist and some seniors and their loved ones struggle to afford quality care. We want seniors and workers to be in alliance, to support and value each other, and to be clear about their respective responsibilities to one another. However, if caregiving in the home continues to be regarded by society in a way that does not recognize it as “real work,” requiring skill and training, we cannot improve and re-envision elder care on a large scale.

Anne Millman, Toni Siegel, and Amy Chalfy (JASA) share their stories at a Elder Care Dialogue in April 2013. Photo: Channa Camins.After the passage of the NYS Domestic Worker Bill of Rights in 2010, a national coalition representing seniors and workers called Caring Across Generations (CAG) was formed to transform long-term care. This national effort advocates for policies that support a system of quality, dignified care. The principal values that CAG seeks to advance are: provide support for consumers and families; create new jobs in home care; improve the quality of care jobs and raise labor standards; increase access to quality training and career ladders for those in the home-care sector; and chart a path to citizenship.

The Aging in NY Hevra was inspired by the Caring Across Generations vision, but we turned our focus to what we could accomplish in New York City. With our new partners from domestic worker organizations and JFREJ, we started to think creatively about ways to increase access to quality training for workers in the informal sector; to improve the quality of jobs and the dignity and respect workers experience in the workplace; and to facilitate education and preparation for seniors and their families who will employ those workers. We are building solidarity and a new approach to caring across generations.

What Did the Aging in NY Hevra and Our Partners Do?
Group discussion on affordability and living wages at Adhikaar in Queens, July 2013. Photo: Larissa WohlWe began research to understand the field of elder care training. To understand the possibilities for training in the informal sector we explored what currently exists in the formal sector. We consulted with experts in the field and observed SEIU 1199 and Paraprofessional Healthcare Institute (PHI) home-care worker training. On top of our desire to see the high core-competency standards that organizations like PHI are promoting in the formal sector, we wanted to assess curriculum and training based on its accessibility, teaching methodology, values, and follow-up. The Urban Justice Center helped us survey and evaluate an array of existing curricula based on a rubric developed by our members.

We decided to pilot a quality training program for workers in the informal sector and a new consumer training that will meaningfully prepare seniors and their family members to begin employing caregivers. We held meetings with potential new partners whose expertise could increase our capacity and help us build the new curriculum.

Ruth Jarmul tweets her photo message to advocate for immigrant rights at Elder Care Dialogue in May 2013. Photo: Channa CaminsWe also focused on an immediate goal: to begin Elder Care Dialogues between workers, seniors and family members including members of B’nai Jeshurun, Damayan, Adhikaar, Domestic Workers United, and JFREJ; later, we were joined by members of Central Synagogue and Golden Steps Worker Cooperative in Brooklyn. We defined “dialogue” as hearing each other’s stories, and creating a space for people to share as equals, in spite of the structural inequities of power and privilege between us.

Each dialogue was facilitated and planned by lay leaders, volunteers and staff, and focused on a different topic. In one year, we had seven immensely rewarding and moving dialogues with between 50 and 120 people at each gathering. We were willing to disagree and recognize areas of conflict in a way that maintained the dignity of all involved. After each dialogue, we debriefed and found ways to improve. We grappled with language barriers and offered translation for workers in Spanish, Tagalog and Nepali when we could.

We set out to discover shared insights and values that would inform new innovative approaches to curriculum and training. Fittingly, the dialogues covered topics including: worker stories and perspectives; seniors’ and family caretaker stories; immigration reform; connections between care work, migration and gender; the care economy, living wages, and access to affordable care; alliance, interdependence and communication; and caregiving and dignity for seniors, workers and their loved ones at the end of life.

Starting with Dialogues: Challenges and Rewards
Carol Rodat (NY Policy Director, PHI) and Debbie Friedman (BJ member and Co-Director of the Labor Management Projec at 1199SEIU Training and Employment Funds) participate in the January 2014 Elder Care Dialogue focused on worker stories. Photo: Channa Camins.People who would never otherwise encounter one another in a safe space sat and had conversations at the Elder Care Dialogues. Bridging our differences was not easy. Sometimes, people did not say what they were feeling in the moment. Even with simultaneous translation, workers sometimes struggled to speak up in small group discussion. Also, because workers and consumers brought assumptions to the table about one another and were sometimes triggered by each other’s comments, we talked a lot about active listening and being open during discussion. All of us needed to debrief after meetings with our own communities to process what we had heard and felt, and share what some people may have missed.

Despite these challenges, we could see the rewards of our efforts unfolding. BJ Aging in NY Hevra members and workers have opened up more as our goals and approach have come into focus. For some participants, the experience changed the way they approached their work, their role as an employer, or how they looked at care, support and reciprocity. The Elder Care Dialogues offered a space for seniors and workers to consider how successful caregiving and the work of elder care requires interdependence.

As we continued to show up and be present for one another, trust was developed, along with new insights. In addition, we have had the opportunity to share some cultural experiences such as celebrating Hanukkah and Christmas at BJ; sharing ethnic foods and songs; and traveling to Queens to attend the Nepali festival of Deshain. There were challenges, but it is because of those challenges that we can truly appreciate and celebrate the success and spirit of the Elder Care Dialogues.

The dialogue approach, though not obvious, has been powerful and consistent with BJ’s Jewish values and the goals of Panim el Panim: to engage face to face in order to build relationships that enable us to see the divinity in each person as we listen to their stories. This is a foundation necessary for sustainable partnership and for successful action.

How Can Hesed and Advocacy Work Together?
This campaign has forced us to reckon with the inevitability of needing care, and to face our vulnerability and fragility, as well as worries for aging with dignity. The Aging in NY Hevra’s advocacy and focus on structural solutions to problems in elder home care will not substitute for hesed in our own community, and the very present need to find ways to support one another spiritually, emotionally and physically. To this end, members of the Hevra have begun to have intimate conversations about how they might support one another and to discuss with our Rabbis and Life Cycles Coordinator Billie Di Stefano what support BJ might have the capacity to organize in the future.

Worker and Consumer Training
Our first task was to initiate dialogue; however, we did not lose sight of our long- term goal: to build and pilot a new worker and consumer training opportunity in New York City that could improve elder care and jobs in the informal sector or private pay market. We are taking the best of what we can learn from organizations doing workforce development in the formal sector, like PHI, expanding upon it, and bringing it to workers in the informal sector, who do not have adequate access to high quality training. As already noted, many B’nai Jeshurun members will be relying on privately-hired workers.

Group discussion, Elder Care Dialogue in October 2013. Photo: Redpapillon Photography

We expanded our partnership to include The Worker Institute at Cornell Industrial Labor Relations (ILR) School and the Cornell Cooperative Extension (CCE). We felt CCE’s past experience building an adult learner- centered childcare training with DWU would make them valuable partners to anchor a new training program pilot.

This winter, four social work graduate students from Smith College and Hunter College, interning with JFREJ, began working with leaders and members from each of our partner organizations, as well as staff from CCE, to begin to outline and craft a pilot curriculum that is consistent with our values, strengthens the consumer/worker relationship, and supports consumers in directing their own care.

Currently, we are trying to incorporate aspects of our Elder Care Dialogues experience and a side-by-side training concept into our new curriculum and training, particularly in modules that cover communication and relationship. By the end of 2014, we plan to conduct two rounds of 15 participants each for the pilot Worker and Consumer Training Programs, which will include seniors, potential consumers, and/or family members managing care.

The Urban Justice Center has been documenting our process with the Elder Care Dialogues, and together we will issue a report to publicize our work, and seek funding, grants, and in-kind support to launch the pilot of our Worker and Consumer Training Programs. The report will also include a tool kit and a replicable model of engagement on elder care for other communities to consider. Ahead of this report, a community in Brooklyn is already looking to produce Elder Care Dialogues, and we look forward to additional communities following our lead as word spreads.

Our hope is that this pilot training program will serve as a platform to create more sustainable supports and structures in the informal sector to advance quality training and preparation for workers and employers in NYC. It could also serve as a base to develop community-based standards of employment and care that are consistent with all of the values identified in our Elder Care Dialogues process. We envision a future for elder care in which workers in NYC could find jobs with consumers who paid a living wage and committed to certain best practices as employers. And seniors could find workers in the informal sector that had access to high quality training with an emphasis on dignified, person-centered care. In the meantime, we are cultivating growing pools of workers and consumers, for whom it is possible to begin to imagine scalable community-based models for matching and direct hiring in the informal sector. This is just one opportunity among many, including peer-to-peer follow up and support for workers; a consumer and worker registry; and other community arrangements in which dignity for seniors and workers go hand in hand.

In 2014, our Elder Care Dialogues will continue to broach new topics and areas of concern. The Aging in NY Hevra invites you to attend a dialogue, join the Hevra, share your story, take action, or consider being a participant in our consumer training pilot this year. Stay tuned for these opportunities.

  1. “Urban Health: Healthy Aging.” Nyam.org. The New York Academy of Medicine, n.d.
  2. Brill Ortiz, Jessica, Sarah Leberstein, and Robin Shaffert. “Federal Policy Development That Strengthen the Home Care Workforce, HCBS and the Economy.” Nasuad.org. NASUAD HCBS Conference, 11 Sept. 2013.
  3. Caring Across Generations, and Align. “Caring Across New York City.” Alignny.org. The Alliance for a Greater New York, Aug. 2013.