United Hospital Fund and Services and Advocacy for GLBT Elders Publish Family Caregiver Guide that Addresses LGBT Issues
Free guide available at NextStepinCare.org and sageusa.org
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, www.NextStepinCare.org, 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 illnesses, 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.
SAGE (Services and Advocacy for GLBT Elders) is the country's largest and oldest organization dedicated to improving the lives of lesbian, gay, bisexual and transgender (LGBT) older adults. Founded in 1978 and headquartered in New York City, SAGE is a national organization that offers supportive services and consumer resources to LGBT older adults and their caregivers, advocates for public policy changes that address the needs of LGBT older people, and provides training for aging providers and LGBT organizations through its National Resource Center on LGBT Aging. With offices in New York City, Washington, DC and Chicago, SAGE coordinates a growing network of 29 local SAGE affiliates in 21 states and the District of Columbia. Learn more at sageusa.org and lgbtagingcenter.org.