Caring Across New York City

Over one million New Yorkers interact with the home care system every day, their quality of life largely determined by how the system treats them. Paid and unpaid caregivers provide in-home services and supports to seniors and individuals with disabilities who need assistance with activities of daily living like bathing, dressing, and eating, and with instrumental activities of daily living like cooking and cleaning.

Demand for home care is growing as New York City’s Baby Boomers turn 65—one every eight seconds —and as life expectancy rises. Two-thirds of people over the age of 65 will need some form of long-term care at some point in their lives. Over 90 percent of aging New Yorkers would prefer that care to be community-based rather than institutional. With the 65 plus population projected to reach 1.4 million by 2030, close to one million New Yorkers could need home care in the next few of decades.

The home care system—which employs 155,000 formal sector home care workers and an increasing share of New York City’s 120,000 to 240,000 domestic workers —will be the single biggest driver of employment in the city in the coming years. Certified home care workers (home health aides and home attendants) are projected to grow faster than any other group of workers in the city between 2010 and 2020, seeing an almost 50 percent expansion, and adding over 76,000 jobs.

The home care system holds the potential to create thousands of good jobs for New Yorkers in need of employment and honor the preferences of seniors to age in place and individuals with disabilities to live integrated within communities. However, in order for the home care system to live up to its great promise, several systemic issues must be addressed.

Many senior and disabled individuals with care needs struggle to access quality home care. With increasing retirement insecurity, and rising costs of care, moderate-income individuals who do not qualify for Medicaid will face major challenges accessing the care they need.

Home care workers ensure that our elders and loved ones with disabilities receive needed care and support, but are often subjected to strenuous and even exploitative working conditions, and earn low wages and few benefits for their labor. An estimated one in five adult city residents provides some caregiving support for family, friends, or neighbors. Unpaid caregivers provide caregiving support to loved ones, many times at great personal cost, and receive little financial, emotional, and training support.

Caring Across Generations is a national effort that seeks to build a home care industry that ensures dignity, respect, and a good quality of life for caregivers and people who receive care. The campaign seeks to create a home care system that will reliably and effectively meet the long-term care needs of the population for years to come, and provide family-sustaining jobs to millions of workers.

At the local level, the New York Care Council—a broad coalition of care providers, people who receive care, and community, labor, and policy advocacy organizations—launched the local chapter of Caring Across Generations at the June 2012 New York Care Congress. Over 500 New Yorkers, including members of labor and community organizations, faith leaders, and public officials, attended the event. Since its launch, the New York Care Council has been growing and gaining support of the national Caring Across Generations policy platform: increase support for people who receive home care and their families, create home care jobs, improve home care job quality, improve home care training and establish career ladders for home care workers, and establish a pathway to citizenship for undocumented workers providing home care.

The Care Council is now working to formulate a local agenda. A strong history of organizing by worker organizations has secured significant gains for New York’s home care workers, including the historic Domestic Workers Bill of Rights and a wage standard and overtime protections for formal sector home care workers. Disability rights and senior organizations have been advocating for more affordable and higher quality home care for decades. These efforts have laid the groundwork for further gains to be won for caregivers and people who receive care in New York City and State.

Committed to taking a ground-up approach to building its local agenda, the New York Care Council launched the Care Connections Survey Project in the fall of 2012. Through more than 1,200 surveys, as well as focus groups and interviews, we uncovered aspects of the home care system that respondents believe are in greatest need of change, informed by the direct experiences of New Yorkers who are caregivers, people who receive care, and family providers/ arrangers of care.

Findings reveal that New Yorkers have a great deal at stake in the home care system–their financial security, health and safety, and dignity and respect. Building a home care system that works for caregivers and people who receive care will require innovative policy and organizing approaches, as well as a cultural project to address the classism, racism, nativism, sexism, heterosexism, ageism, and ableism at the root of the undervaluation and indignities that both caregivers and people who receive care experience within the home care system.

Major Findings:

Top 5 priorities of all New York City residents surveyed:
1. Raising wages of home care workers (86%)
2. Ensuring health care access for home care workers (58%)
3. Providing better quality training for home care workers (57%)
4. Providing retirement security to home care workers (48%)
5. Improving monitoring of abuse/neglect of people who receive home care (47%)

Top 5 priorities of New York City caregivers surveyed:
1. Raising wages of home care workers (90%)
2. Ensuring health care access for home care workers (67%)
3. Providing better quality training for home care workers (62%)
4. Providing retirement security to home care workers (58%)
5. Creating opportunities for career advancement for home care workers (52%)

Top 5 priorities of people who receive care in New York City surveyed:
1. Raising wages of home care workers (87%)
2. Providing better quality training for home care workers (57%)
3. Ensuring health care access for home care workers (53%)
4. Improving monitoring of abuse/neglect of people who receive home care (52%)
5. Improving home care affordability (49%)

Poverty wages – 62 percent of formal sector home care workers and 92 percent of domestic workers surveyed reported that their annual household income is under $25,000; 27 percent of formal sector home care workers and 38 percent of domestic workers surveyed reported that their annual household income is under $15,000.

Quality of care concerns – 38 percent of people who receive care surveyed described the quality of their home care as “very poor,” “poor,” or “fair.”

Care affordability concerns – 69 percent of survey respondents with unmet care needs cite inability to afford the care they need as the reason for not receiving required care.

Rising demand for home care – 51 percent of all survey respondents (median age of 57) anticipate that they or a loved one will need home care for the first time in the next ten years.

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