Leading Advocate Proposes Guidelines to Create Systemic Support for Family Caregivers
Recommendations would benefit nearly 2 million family caregivers throughout the state
NEW YORK, NEW YORK November 14, 2006—At today's official launch of the New York City Family Caregiver Coalition, Carol Levine, director of the Families and Health Care Project at United Hospital Fund, is calling attention to the challenges facing the state's nearly two million family caregivers, whose growing needs are most often unmet. These family caregivers provide an estimated $20.4 billion worth of unpaid care in the state—in fact, most of the care for the vast majority of the state's approximately 2.3 million adults and more than 500,000 children with chronic health conditions or disabilities who live in the community.
“Today there are more pressures to move people out of hospitals, nursing homes, and other professional care settings as quickly as possible,” says Ms. Levine. “But as we move patients into the care of family members, we must make sure these family caregivers have the training, support, and resources to handle the accompanying responsibilities. To address this, we need a bold agenda to guide future health reform discussions.”
In her keynote speech at the event, Ms. Levine will formally present a policy agenda, which is intended to enhance the lives of New York State's individuals who need assistance and their family caregivers. The policy agenda calls for an assessment of caregivers' needs and available services to meet those needs, a review of key policies and practices, the establishment of a mechanism to coordinate caregiving-related activities and policy implementation, and a focus on strengthening local agencies to reach, assess, and support caregivers. The policy agenda also calls for a strong statement of support for caregivers.
In addition to these policy and program recommendations, Ms. Levine is also presenting an ethical framework for public policy—a statement of basic values, principles, and community norms that should govern policy-making and implementation. It spells out the standards by which specific regulations, policies, and programs can be measured.
“People don't take on caregiving because of a legal obligation,” says Ms. Levine. “Most often, they do it because it's the right thing to do; in other words, it's a matter of ethics. Family caregiving is a responsibility that affects both intimate private relationships and public resources, and government must be guided by ethics to do the right thing for family caregivers. That's why this ethical framework, the first of its kind, is so important.”
The full text of both documents, which were developed through a project that was funded in part by the Greenwall Foundation, are available on-line:
New York State Policy Agenda for Family Caregivers
An Ethical Framework for New York State Policy Concerning Family Caregivers.
The New York City Family Caregiver Coalition (NYCFCC) is a united forum of approximately two dozen organizations—some focused on a specific disease or patient population, others on long-term care or broader health care policy—working to build on their diversity to effect targeted action, including advocacy, education, and the raising of public awareness. The coalition is co-chaired by James O'Neal, The Visiting Nurse Service of New York-VNS CHOICE, and Rev. Gregory Johnson, HIP Health Plan of New York's Care for the Caregiver Program. The NYCFCC is sponsored by the Council of Senior Centers and Services, NYC Inc., and the launch and reception are hosted and underwritten by HIP Health Plan of New York.
Reasons the caregiving policy recommendations are critically important:
• Changes in demographics, workforce patterns, and health care economics and services have resulted in a dramatic change in the extent and complexity of caregiving.
• The growing trend toward community care as an alternative to institutionalization depends on unpaid family caregivers.
• Family members provide 75-80% of long-term-, home-, and community-based care for elderly people.
• An increasing body of evidence demonstrates that family caregiving takes a major toll on the caregiver.
• Half of all family caregivers are employed, and the losses to the economy when they leave or lose their jobs or fail to work to their full productivity are significant.
• Caregiving is a valuable state resource, and the loss of even a small percentage of this unpaid care would result in significant increases in public spending.
The United Hospital Fund is a health services research and philanthropic organization whose mission is to shape positive change in health care for the people of New York. For more information, please visit www.uhfnyc.org.
Resources for family caregivers and health care providers are available at our Next Step in Care website.