New Campaign Aims to Lighten the Burden of Care

Everyone deserves the freedom to live great lives and the ability to support their families. But the astronomical costs of child care and elder care put a damper on the enjoyment that comes along with caring for a loved one.

Once baby boomers reach retirement age, and life spans continue to increase, viable eldercare options will be in greater demand. As the national conversation on paid parental leave and family care decisions escalates, several states are advancing policy initiatives to ease the financial and time constraints of care.

On January 18, Rhode Island Jobs with Justice launched a coalition to enact RhodyCare, an ambitious policy to address universal family care needs. State legislators, care professionals, labor advocates, and community partners came together to present this innovative campaign for expanded access to child care and elder care for people working in the state.

An estimated 134,000 family caregivers across the Ocean State provide an approximate 142 million hours of uncompensated care – in large part to Rhode Island’s ever-expanding elder population. The high cost of living and idling wages already challenge Rhode Islanders’ ability to make ends meet. Skyrocketing childcare and eldercare expenses further exacerbate the problem.

RhodyCare comes on the heels of Hawaii’s groundbreaking Kūpuna Caregivers Program. Last summer, Governor David Ige enacted a law creating a fund providing eligible families with up to $70 per day to assist with caregiving costs. The program lessens the financial burden on caregivers as they juggle work and family.

Advocates in Washington State also are following Hawaii’s lead with a similar push to make the costs of elder care more affordable for the state’s 830,000 family caregivers. The Long-Term Care Trust Act would provide long-term care insurance through a small payroll deduction. Working people can then use those funds to cover in-home care costs (an expense that Medicare does not cover) for one year. Sarita Gupta, Jobs With Justice executive director, and co-director of Caring Across Generations, explained that this legislation will benefit working people taking care of their Baby Boomer parents. “They’re living much longer than ever before – about 20 years longer than when our safety net was put into place,” she said. “So, we need more supports around elder care, and a lot of the financial burden is falling on families.”

Mainers are next in line for long-awaited assistance for in-home care provisions. Maine has the largest number of senior residents in the United States, and that number is expected to double by 2030.This year, Maine People’s Alliance and its network of volunteers and supporters generated more than 67,000 signatures of support for a Homecare for All ballot measure. The initiative would raise taxes on residents earning over $127,000 to back in-home senior care, as well as care for those with disabilities. Once the Secretary of State validates the signatures, the legislature will decide whether to enact the measure or move it to the public for a vote.

It’s great to know that a handful of communities are generating meaningful fixes to our crumbling care infrastructure. Solutions can’t come fast enough for women who make up the majority of the professional care workforce and deliver millions of hours of uncompensated care to family members.

Susan O’Connell is a Rhode Island resident with firsthand experience as a “sandwiched” caregiver juggling dual caregiving roles. The single mom was busy raising a teenage girl and running her own small business. Then one day, Susan’s mother died in her sleep, leaving her dad (who had early onset dementia) without a caretaker. She stepped in to take on the role her mom played. As a result, Susan had to shutter her business to manage shuttling her daughter back and forth to school, while also transporting her father from his home to hospitals and rehab centers.

The stress of driving 180 miles every day across Rhode Island, the loss of income, and expensive care costs “threw her life in a tailspin.” Susan backs the RhodyCare campaign because, “We should be able to keep people on a track when they have to take time out of their lives to become caregivers. We should have supplemental care for people who make the choice to take care of their family.”

The average family member, age 50 or over, who leaves their jobs to care for a family member will lose $303,880 in income, including salary, Social Security benefits, and private pensions. No one should feel forced to decide between maintaining a career and sustaining the needs of family members. And it’s not only working people who suffer. Businesses lose close to $33 billion per year when employees drop out of the workforce to provide full-time care for someone.

We need a permanent remedy to our broken care system that can weather the storm of growing care expenditures. Hawaii already set a precedent for other states to follow, and Maine, Washington, and Rhode Island have solutions in the works. A universal approach, including child care, long-term care, and family medical leave, is the contemporary solution for all. Working people need sustainable care choices to secure a better quality of life for themselves, and their nearest and dearest so each of us can work, live, and care with dignity.

We can’t relent in our efforts to unite against corporate CEOs trying to gut our health care and attack our freedom to lead healthy lives and age with dignity. But let’s take a moment to celebrate a milestone in Hawaii for the daughters, sons, spouses and other family members providing critical in-home care for their aging loved ones.

Yesterday Governor David Ige signed a bill (HB607) establishing a landmark program to assist families with their caregiving responsibilities. The novel Kūpuna Caregivers Program will provide up to $70 per day to help cover the various costs of long-term care.

This assistance plan, named after the Hawaiian term for elder, will offer caregivers relief as they juggle work and family. The new fund also fixes one of Medicare’s shortcomings for working families, as the social insurance program does not reimburse for most long-term care costs outside of a nursing facility.

The program’s goal is to keep more people in the workforce while also providing quality care for aging family members. No one should have to choose between their retirement security and caring for their parents as they age. Too often, caregivers, who predominantly are women, have to leave the workforce because the burden of family care is not affordable or sustainable. This challenge led to many small business owners, who can’t afford losing staff, to back Hawaii’s initiative.

Hawaii residents who work 30 or more hours a week outside the home, and who serve as the primary caregivers are eligible to enroll. Participants can use the funds to hire a trained home health aide to tend to their loved one(s) with a chronic or disabling need. The care can range from a few hours or a full day, depending on the needs of the kūpuna and the family caregiver’s work and personal responsibilities. The stipend also can cover the costs of driving an elder to a medical appointment, hiring someone to do household chores or other assistance a caregiver provides.
The Kūpuna Caregivers Program provides a launchpad for achieving universal access to affordable, and quality long-term care—an aim of our Caring Across Generations campaign that Jobs With Justice co-leads with the National Domestic Workers Alliance. Caring Across, in partnership with Faith Action for Community Equity (FACE), invested significant time and resources in crafting and advancing the Kūpuna Caregivers bill. Hawaii activists and residents were instrumental in galvanizing legislators to prioritize the “Care for Our Kūpuna” campaign, through their ongoing presence at rallies and at the state capitol.

Caring Across hopes to catalyze other communities to follow Hawaii’s lead in easing the economic toll of caregiving. Slate reports that “Washington State is considering a bill that resembles” the initial program proposal in Hawaii that would have generated a much larger universal benefit based off a bigger revenue increase. Lawmakers in Maine, Michigan, and Minnesota are exploring other strong solutions to long-term care.

Achieving a caring economy where everyone can thrive requires both quality care and good jobs. Caring Across and its partners in Hawaii now will work with state administrators to ensure that the homecare aides paid through the program receive family-sustaining wages.

Most of us aren’t planning for long-term care right now. It’s daunting to think so far ahead, even for the savviest of consumers, especially when most of us are struggling to save for retirement and when you consider the overwhelming costs.

When we do open up and talk about what we want when we get to that stage in life? How about right now?

Ninety percent of Americans would generally prefer to stay home and receive the help and care we need in our own community, rather than in a facility. But the challenge is that most people do not have the financial resources to adequately cover the cost of care in their home. In fact, the cost of receiving care continues to rise sharply year over year, especially for services in the home, according to the Genworth 2016 Cost of Care Study.

Despite what many assume, Medicare does not provide long-term care coverage, and to qualify for Medicaid – the largest provider of long-term care – families have to spend their savings, assets and retirements they worked so hard for down to poverty levels. Private, long-term care insurance covers fewer than eight percent of Americans. Even then, it often doesn’t cover all of a person’s home-care needs, resulting in an overreliance on family caregivers. AARP estimates that 44 million family members in the United States provide about 25 hours of care each week, services that are worth roughly $522 billion. Family members are often incredible care givers, but providing that care can create financial and emotional stress.

Communities are coming together to initiate and press for long-term care solutions to honor the wishes of our seniors, improve their health outcomes and reduce the cost burden of long-term care on both family caregivers and the state. Advocates in Washington state recently won funding for a feasibility study of financing options for long-term care, and advocates and organizers in dozens of other states are planning similar studies.

Advocates in Hawaii moved a bill in the legislature this year to create a long-term care benefits trust fund that would ensure all Hawaii residents in need of care at home would be able to access a long-term care benefit of $70 per day for 365 days to help pay for the cost of providing care at home. This trust would offer a meaningful supplement for the support family caregivers need, like hiring home-care aides to help aging Hawaii residents stay in their houses safely and comfortably. The program advocates are aiming to establish would not prevent anyone from purchasing private, long-term care insurance to extend the amount of coverage they have, or impact their ability to qualify for services through Medicaid.

A long-term care fix like this would improve the emotional and physical health of aging Americans. Studies show that health outcomes are significantly improved when aging people are at home, rather than in a hospital or long-term care facility. A public, long-term care program would also benefit working people by infusing revenue into expanded home-care options and creating new jobs in home care. As coverage options expand, so too does the leverage of care providers, who typically do not earn enough to sustain their families, in spite of the important work they do. When more families need home care and now have the resources for it, care providers can come together to earn a fair return on their work. Said Darlene Rodriguez, a family caregiver in Hawaii, “We need to value caregiving, to recognize that we all need to come together, to pool our resources together, to support our ability to care for our elders.”

Our country’s long-term care challenges won’t be served by a quick fix. But multipronged approaches such as the innovative policy solutions coming from Hawaii could be a real breakthrough in addressing this care crisis.

A new report released by researchers at Rutgers University Center for Women and Work breaks new ground in studying the growing field of care work by asking home-care consumers to define “quality” care and describe how care-worker training affects the quality of care they receive. Through interviews with both care consumers and attendants, the report makes the case that home-care attendants must obtain training that is both hands-on and specific to the consumers’ conditions. This finding is a call to action for policymakers overseeing home-care systems to ensure that home-care attendants actually receive access to adequate training.

The research was commissioned through a grant from the Jobs With Justice Education Fund. As part of the study, Widener University professor Linda Houser interviewed consumers and attendants associated with the Liberty home-care agency. The study was conducted in Pennsylvania partly because several years ago, the state legislature slashed home-care budgets, resulting in the closure of an 80-hour joint attendant-consumer training program called Building Bridges, administered by the attendants’ union. Now Liberty’s attendants only receive a three-hour pre-employment training. Houser’s research makes a compelling case for the reinstatement of the Building Bridges program:

“While even the three-hour training provides attendants with some useful general knowledge with which to begin, attendants lack condition-specific knowledge, as well as hands-on knowledge. In some cases, this leads to some in-home trial-and-error that may, in turn, contribute to failed consumer-attendant connections; frustration, anxiety, and shame on the part of consumers and attendants; and even a risk to consumers’ physical well-being.”

The consumers interviewed are all receiving home-care because of their disability. Those interviewed were clear about the risks to their physical well-being when attendants were not properly skilled and cited a range of trainable skills that were required for quality and safe care. One consumer told Houser that while she tries to show new attendants everything, “If they don’t know, I’m in trouble. So more medical background would be great.”

For the consumers who went through the Building Bridges program, their enthusiasm and strong recollection of the training content reveal the value of the hands-on, joint consumer-attendant model. One consumer noted:

“I could tell the quality by how the workers were trained. I guess that is why I brought two of the workers back because they were trained [through Building Bridges].”

In addition to underscoring the importance of adequate training for quality care outcomes, this new report from Rutgers lends a consumers’ perspective on the impact of care-worker turnover. Consumers identified stability as a key component of quality of care. One consumer explained, “I don’t like getting to know different ones. It really throws me off, you know? Then I need to show them the ropes.”

Given the findings of prior research that improving wages and benefits for home-care workers reduces turnover, these consumer preferences for stability bolster the case for raising standards for home-care providers. As one consumer asserted, “I think this work should start out at $15/ hour. Just from a human perspective.”

The research makes a compelling case for the need to modernize and standardize the care workforce, both for the benefits of the workers themselves and the people they care for.

Home-care workers – the fastest growing, lowest paid workforce in our country – are central to the future of our economy, and we can no longer afford to ignore their needs. These workers are on the front lines of caring for our country’s rapidly aging population, yet they’re often paid poverty-level wages and have few rights on the jobs. The question of how to provide adequate care for our parents and grandparents poses an incredible challenge for millions of families.  That‘s why Jobs With Justice and the National Domestic Workers Alliance launched the Caring Across Generations campaign, and it’s the main issue Caring Across’ co-director Ai-jen Poo tackles in her new book, The Age of Dignity: Preparing for the Elder Boom in a Changing America.

The Age of Dignity was written to inspire change in the way we care for one another in America. At the intersection of our aging population, the fraying safety net, and opportunities for women and immigrants in the workforce, the book weaves personal stories into solutions to address America’s new demographic and economic realities, particularly the growing need for caregivers.

Our own Sarita Gupta understands all too well the tremendous value care workers play in our society and the struggle so many family caregivers go through to care for their loved ones.  Her own father was diagnosed with Alzheimer’s three years ago, and her mother has become his primary caregiver – caring for him as well as their household. As Sarita wrote in a recent article in The American Prospect, “In the near future, we, like millions of other families across the nation, will need the help of home-care workers to allow the members of the family to continue working full-time while ensuring people like my father can age in the way that most of us want – with dignity and independence, at home and in our own communities.”

Sarita will be sharing her story in various cities as part of the Age of Dignity and the Caring Across America Book Tour. We hope you will join us during this tour when it comes to a city near you!

Learn more and buy your copy of the book at

UPDATE (1/23/2015): Yesterday, the Department of Labor filed an appeal to the lawsuit brought by home care companies challenging the Home Care Final Rule and stated:  “We believe the Rule is legally sound and is the right policy—both for those employees, whose demanding work merits these fundamental wage guarantees, and for recipients of services, who deserve a stable and professional workforce allowing them to remain in their homes and communities.”

Last week, a federal district court in Washington, D.C., issued an order vacating the 2013 Department of Labor rule requiring minimum wage and overtime protections for home-care workers. The ruling was a disappointing end to a lawsuit brought by the home-care industry and the International Franchise Association, who took issue with the department’s changing the definition of “companionship services,” thereby ensuring in-home “companions” – hardworking, dedicated home-care workers – would receive the minimum wage and overtime protections granted to most other workers in our country.

The good news is that the Department of Labor can appeal this decision. Jobs With Justice, Caring Across Generations, and allies from across the consumer and care-provider communities who understand the importance of these protections in ensuring quality care are actively encouraging the department to do so.

Despite the ruling – all states can and should move forward to implement these basic protections for home-care workers. In fact, 15 states already have such protections (another seven states provide minimum wage but no overtime) – and nearly every state had begun to prepare for this change in their 2015 budget and planning process. Given our nation’s rapidly aging population, establishing basic legal protections for the workforce who will allow our parents and grandparents to age with dignity at home is more urgent than ever.

Unfortunately, some states are using the ruling as an excuse to leave better pay for care workers out of their budgets. A few days after the ruling, California announced it would not include overtime pay for home-care workers in its budget. This is a shameful decision given the importance of the care workforce in California, which supports almost half a million California seniors and people with disabilities.

Home-care workers have never enjoyed the same protections that other workers have and have always had to fight to be visible in our country’s eyes and laws. So while the judge’s ruling and California’s decision are setbacks, care workers continue to seek justice in organizing efforts around the country. In fact, only days after the D.C. court’s decision, 27,000 Minnesota care workers represented by SEIU Healthcare Minnesota voted on their first contract, a huge victory that will provide a wage floor of $11.00 an hour, five days of paid time off and funding for training.

By combining legislative and regulatory efforts with effective organizing and collective bargaining strategies, home-care workers will continue to come out of the shadows and toward a path of dignity and respect.

Millions of people are currently impacted by the fractured and broken long-term care system in this country. They are seniors and people with disabilities who need support to remain independently at home but struggle to afford the care they need.  They are sandwich generation women – primary caregivers for their kids and responsible for coordinating or providing care to their aging parents.  They are the 34 million family caregivers – mostly unpaid – who have left the workforce to care for a relative, sometimes 24 hours a day, seven days a week. They are home-care workers – who struggle daily to make ends meet, earning a median wage of $9.38 an hour.

And there are millions more who will be impacted by the issues facing our long-term care system as our population rapidly ages.  Every eight seconds, someone turns 65 – that’s 10,000 every day, and 70 of people over 65 will need long-term care at some point in their lives.  In fact, the number of people needing long-term services and support is expected to grow from 13 million in 2000 to 27 million in 2050.

These tens of millions of people – young and old and in between – make up what we like to call the caring majority. It’s a majority that we must activate and mobilize to win the changes we need in our long-term care system – one in which caregivers and consumers are truly valued. 

The need for elder care and home care poses a tremendous opportunity to transform one of the fastest growing job sectors in our economy, moving it from low-paid or unpaid work into an industry that allows people to age with dignity, to spend time with loved ones, to care for children, and to earn a decent wage for hard work. We can create precisely the kind of economic growth we need in our country right now: a caring economy of the 21st century that is based on human values of interdependence, dignity and the need to care for one another. 


On October 18, Caring Across Generations and SEIU organized the first Care Canvass Day of Outreach. In over a dozen cities, home-care workers and supporters talked to thousands of voters about the need to strengthen our home-care and long-term care systems, as well as stand strong with the home-care workers in their fight for $15 wages. This work of knocking on doors one by one is what builds the caring majority and brings home care into the national spotlight. 

You can join the caring majority by signing this pledge to become a home-care champion.  

Colorado Caring Across Generations – co-anchored by Colorado Jobs With Justice, 9to5 Colorado and El Centro Humanitario – has released a report documenting the growing and urgent need for affordable, quality in-home health care in the state. The report cites the explosive growth of seniors in Colorado – between 2010 and 2030, the senior population will grow by 150 percent – as the driving force behind the need to industrialize Colorado’s caring economy.

“Our seniors and people with disabilities want to and should be able to live independently in their homes with dignity and the care they need,” said Erin Bennett, Colorado director of 9to5 and co-chair of Colorado Jobs With Justice. “It is absolutely essential that we act now to develop a professionalized workforce to be able to handle the exploding need for home care.”

The report features firsthand accounts from caregivers for seniors and the disabled, including family caregivers like Beverly Grant, the mother of a daughter with disabilities. Grant explains, “The best place for my daughter Blayre is with me, at home where she can thrive and be around loved ones. The critical support of home-care workers – and a public program that helps us cover the cost – have made it possible for her to stay at home. People with disabilities and elders are depending on an adequately trained and compensated workforce.”

To meet the growing care demands among elder Coloradans and people with disabilities, not only must the home-care workforce grow, but the jobs must be quality jobs. The report documents the low pay, minimal training and lack of opportunities for career advancement that face home-care workers, ultimately leading to high job turnover in the field. As the report states, more than 67 percent of home-care workers in Colorado earn less than $21,000/year.

“I was dedicated to providing quality care to my clients, but the fact is it was a dead-end job in terms of low pay and no path to better jobs,” said Araceli Diaz de Leon, a former home health-care worker in Thornton, Colorado. “I’m working in another field because I just couldn’t make ends meet in home health care.”

The report has already attracted the attention of legislators, many of who are considering federal action to support the country’s age wave and rapidly expanding home-care workforce. U.S. Senator Michael Bennet (D-Colo.) praised the research, issuing a letter of support which read in part:

In particular we applaud your contribution to the research of issues affecting the care of our aging population and to the development of solutions in caring for our parents, grandparents and neighbors…. As our loved ones age, living with dignity and integrity should always be an option…. The release of this report gives us a roadmap to begin work in that direction….”

Download the full report here.

They did it!  Massachusetts domestic workers and their allies, including Massachusetts Jobs With Justice, recently passed a statewide domestic workers Bill of Rights. Massachusetts marks the fourth state to pass a domestic workers Bill of Rights in four years, following New York, California and Hawaii. The trend reflects a growing recognition from workers, employers and allies that domestic work is, in fact, real work and that it deserves real on-the-job protections. As momentum builds for significant changes in how the nation’s labor laws regulate home care work, campaigns for other bills are active in another half dozen states as well.

But the Massachusetts bill is the most comprehensive domestic workers Bill of Rights yet, providing clear guidelines for employers; codifying the workers’ right to a written contract, just cause termination and maternity leave; and affording workers additional protections by bringing them under the coverage of the Massachusetts Commission Against Discrimination.

The best part of this victory is that domestic workers were on the front lines of this win. It was their leadership, experience and stories that helped set into motion a legislative plan to change the landscape for this low-wage workforce. This victory was made possible because of strong partnerships between workers, employers, advocates and legislators who came together through the powerful Massachusetts Coalition for Domestic Workers, as well as the more than 80 other endorsing and supporting organizations engaging in the campaign. The large-scale grassroots campaign that carried the bill was four years in the making.

Natalicia Tracy, Brazilian Immigrant Center executive director and co-founder of the coalition, noted, “Massachusetts Jobs With Justice played a powerful role in this effort by directly supporting activities at the state house, specifically in the education of legislators about the importance of the bill. JWJ also promoted the campaign and brought it visibility by sharing information across their networks.  The coalition and the movement benefitted greatly from the efforts of a broad range of JWJ staff, who always recognized the urgency of changing exclusionary labor policies that were vestiges of slavery and Jim Crow in this country.”

This win is also part of a wave of strong low-wage worker organizing spreading across the country. The same week that Massachusetts passed the Bill of Rights, the state also passed the highest minimum wage law in the country.

The domestic worker bill in particular is even more significant in the wake of the Supreme Court’s recent Harris v. Quinn decision. As the nation’s highest court attempts to erode the right of workers, strategies that incorporate innovative policy solutions and strategic organizing tactics will ensure that the workers’ rights movement will still be able to come together to help transform workplaces.

Passing the Bill of Rights, of course, is not only a history-making end, but also a beginning. Just as strong solidarity and collaboration in the movement were necessary for passing the bill, its implementation and enforcement will also require all allies to work together to see that it becomes not just another law on the books, but a reality, one that changes our culture and brings more genuine respect and value to the contributions these workers bring to families and communities everywhere.

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