Family Member: Getting Quality Care

This page contains resources, tips and tools to help you get quality long-term care for your loved one. Click on the topic areas below to find more information.

Residents’ Rights

Residents’ Rights are guaranteed by the federal 1987 Nursing Home Reform Law, and nursing homes must meet federal residents’ rights requirements if they participate in Medicare or Medicaid. Visit the links below for consumer information and resources that can help you support an individual resident’s rights or be involved in an important national awareness campaign.

View the Residents’ Rights fact sheet to learn more about the topic.

October is National Residents' Rights Month 2011, and this year's theme is "Welcome Home: Creating Connections Between Residents and the Community."

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Law and Regulations

The Nursing Home Reform Law is the Omnibus Budget Reconciliation Act of 1987 (OBRA '87) was landmark legislation for federal standards for nursing home care. Click on the above link to learn more about OBRA.

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Family Councils

Family members in a facility can join together to form a united consumer voice which can communicate concerns to facility administrators and work for resolutions and improvements by forming a family council. Visit the Family Council Center to learn more about family council rights, regulations applying to long-term care facilities, effective council advocacy, and tools for forming an effective council, and more!

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Fact sheets

Fact sheets are to-the-point summaries on the most common issues facing family members and nursing home residents. Each document answers key, frequently asked questions. View Consumer Voice’s fact sheets for family members of nursing home residents.

Encouraging Comfort Care: A Guide for Families of People with Dementia Living in Care Facilities
This free, online 21-page booklet, produced by the Alzheimer’s Association-Greater Illinois Chapter, provides information to families and staff of long-term care facilities about Alzheimer’s disease and other dementias, particularly care issues related to the late and final stages. For families, this guide offers information on informed choices about a variety of medical decisions they may face on behalf of loved ones with dementia living in nursing homes, assisted living facilities, and other types of care settings. It is also intended to equip families with questions to ask about obtaining quality care for their loved ones, including a checklist of comfort care measures to be discussed with staff members of care facilities. For staff, the guide will serve as a tool to help educate families and assist them in care planning. Individuals and organizations are encouraged to disseminate this booklet in electronic and print formats.

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Citizen Advocacy Groups

Citizen advocacy groups (CAGs) are groups of concerned citizens who work to improve the quality of care for nursing home residents in their locality, state, or region, and many groups have expanded their focus to address quality of care issues across the long-term care continuum. Members of these groups are often people who have had loved ones in nursing homes and are concerned about nursing home residents. The groups share a commitment to improving the quality of care and life for residents who are in need of long-term care. They may be able to inform you about resources in your state, the quality of care in particular facilities, and the current status of long-term care reform in your state. Visit the Citizen Adovcay Group Center to learn more information.

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Consumer Voice Projects with Family Members

This project trained nursing home residents and their families nationwide through teleconference seminars and a web-based consumer education center. Topics addressed include: Resident-Directed Care Planning; Restraint-Free Nursing Home Care; Residents' Rights; Communication; Eating with Dignity; Incontinence and Quality Care.

  • Visit Consumer Voice's Family Council Center to learn more about Consumer Voice’s family council projects.

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Other Resources

 Home or Nursing Home: America’s Empty Promise to Give the Elderly and Disabled a Choice
There's been a quiet revolution in the way the elderly and young people with disabilities get long-term health care. A new legal right has emerged for people in the Medicaid program to get that care at home, not in a nursing home. States, slowly, have started spending more on this "home- and community-based care." But there are barriers to change: Federal policies are contradictory, and states face record budget deficits. As a result, for many in nursing homes — or trying to avoid entering one — this means the promise to live at home remains an empty promise.

NPR continues to expand their series “Home or Nursing Home: America’s Empty Promise to Give the Elderly and Disabled a Choice” through a recent presentation about home care as a civil right. Access the entire series of articles, statistics (including a map of community-based Medicaid spending by state, an interactive database about the independence level of residents at nearly 16,000 individual nursing homes, etc.) by visiting NPR's website.

Piecing Together Quality Long-Term Care: A Consumer’s Guide to Choices and Advocacy
This consumer guide, developed in March 2011, educates people with disabilities and older adults about their options for long-term services and supports and empowers consumers to be self-advocates for quality long-term care. The guide includes tips from consumers as well as information and resources to assist people currently living in nursing homes to move back into the community. The guide is available in several formats, including an HTML version, a PDF version and audio portions of the guide; a hardcopy is also available for $20.

Stories from the Field: LGBT Older Adults in Long Term Care Facilities
The National Senior Citizens Law Center (NSCLC), in collaboration with Lambda Legal, the National Center for Lesbian Rights, the National Center for Transgender Equality, the National Gay and Lesbian Task Force and Services & Advocacy for GLBT Elders (SAGE), has published a report on the experiences of LGBT elders in long-term care facilities based on a survey seeking to better understand the experiences of LGBT older adults in long-term care settings. The report includes hundreds of stories and comments from LGBT elders across the country as well as policy recommendations and pertinent resources. For more information, please visit www.lgbtlongtermcare.org.
 

Your Discharge Planning Checklist: For patients and their caregivers preparing to leave a hospital, nursing home, or other health care setting
Being discharged from a hospital and going home or moving between other care settings can be stressful for consumers and caregivers. This discharge planning checklist  from the Centers for Medicare and Medicaid Services provides consumers and their families with information about these kinds of transitions.

Jessica Brill Ortiz, program manager, and Becka Livesay, program associate – communications and outreach, presented an overview of the Consumers for Quality Care, No Matter Where initiative at the 2011 Aging in America conference in San Francisco.  The presentation detailed the Consumer Voice’s work with advocates across the country to empower consumers to be self-advocates for quality care while building a bridge between the aging and disability communities. In keeping with this work, the presentation outlines the steps taken to make the consumer guide easily accessible to persons with disabilities on the Consumer Voice website using low-cost and effective technology.  Also highlighted were three citizen advocacy groups’ work to develop and distribute a state-specific guide aimed at educating and empowering older adults and persons with disabilities in need of long-term-care services to make informed decisions and become self-advocates for quality long-term care.  The Consumer Voice is in the process of developing a “How To” document to help citizen advocacy groups across the country produce and disseminate their own guides.  Access the presentation slides online.

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Looking for information for residents of long-term care? Visit the Resident Section of our website.