United Hospital Fund and Services and Advocacy for GLBT Elders Publish Family Caregiver Guide That Addresses LGBT Issues
Free Guide Is Available on www.NextStepinCare.org
People who are lesbian, gay, bisexual, or transgender (LGBT)—whether they are caregivers or the ones in need of care—may encounter special challenges in health care. To address those challenges, the United Hospital Fund and Services and Advocacy for GLBT Elders (SAGE) have partnered to create a guide to help members of the LGBT community better navigate the health care system.
The first publication of its kind, A Guide to LGBT Caregiving addresses a range of concerns—from advance directives and other legal documents, to considerations regarding self-identification, to the realities of discharge planning and home care. The guide also places these issues in historical context, shedding light on the role LGBT caregivers have played and the reasons some members of the LGBT community are concerned about their encounters with health care providers
“SAGE came to us to propose the creation of this guide, and we quickly agreed that it could address a real unmet need,” said Carol Levine, director of the Families and Health Care Project at United Hospital Fund. “Navigating the health care system is challenging for everyone, and this guide aims to assist members of the LGBT community recognize both that they share concerns with other caregivers and that they have special issues to resolve.”
“Many LGBT older adults, who are often estranged from their families of origin, must rely on partners, friends, and families of choice for caregiving. Because these relationships are not recognized under federal and many state laws, LGBT caregivers are often denied the resources and medical decision-making authority extended to their heterosexual counterparts,” said Catherine Thurston, senior director of programs at SAGE. “Developed in collaboration with United Hospital Fund, an organization committed to quality health care for all New Yorkers, this guide acknowledges the importance of LGBT caregivers’ relationships, while providing them with essential support during an often difficult time.”
Available in English, Spanish, Chinese, and Russian, the guide is the latest addition to the Next Step in Care website, which was created by United Hospital Fund to improve the working relationship between family caregivers and health care providers. The website offers a range of free guides and checklists—most intended for family caregivers of persons with serious illness, with some specifically for health care providers—designed to make patients’ transitions between care settings smoother and safer.
An estimated 42 million Americans, or one in five adults, are family caregivers—defined as relatives, partners, friends, or neighbors who provide or manage full- or part-time care to a chronically ill or disabled person. Family caregivers are an essential part of the health care workforce, providing 80 percent of chronic and long-term care in the U.S., and pressures on them are growing. Shorter hospital stays and increased use of outpatient procedures—changes that have increased the effectiveness of medical care in many ways—have shifted responsibility from paid to unpaid providers of care, increasing burdens on family caregivers.
Coordinating care during transitions is particularly challenging in today’s health care system, in which chronically ill patients visit many physicians during any given year and may take a dozen prescription medications daily.
Along with the concerns common to most family caregivers, LGBT caregivers face additional pressures. A lifetime of social stigma causes many LGBT older adults to fear that they will face hostile or unwelcoming health care providers or might encounter care workers who are unfamiliar with the needs of the LGBT community—pushing them back in the closet and preventing them from seeking the medical attention they need. This can lead to financially and mentally overextended caregivers, as well as the premature institutionalization of care recipients in nursing homes or other long-term care facilities.
About the United Hospital Fund: The United Hospital Fund is a health services research and philanthropic organization whose primary mission is to shape positive change in health care for the people of New York. The Fund’s Families and Health Care Project works to advance public and professional understanding of the crucial role of family caregivers in the health care system. Learn more at www.uhfnyc.org.
About Services and Advocacy for GLBT Elders (SAGE): Services & Advocacy for GLBT Elders (SAGE) is the country’s largest and oldest organization dedicated to improving the lives of LGBT older adults. SAGE has pioneered programs and services for the aging LGBT community, provided technical assistance and training to expand opportunities for LGBT older people across the country, and provided a national voice on LGBT aging issues. In 2005, SAGE became the first official LGBT delegate at the White House Conference on Aging. In 2010, SAGE was awarded a three-year $900,000 grant from the U.S. Department of Health and Human Services and the Administration on Aging to seed the creation of the nation's only National Resource Center on LGBT Aging. Learn more at www.sageusa.org and www.lgbtagingcenter.org.
Resources for family caregivers and health care providers are available at our Next Step in Care website.