Consumer Links
Other organizations for consumers to contact about long-term care and caregiving are described below.
AARP AARP supplies information about caregiving, long-term care and aging, including publications and audio-visual aids for caregivers.
Advancing Excellence in America's Nursing HomesAdvancing Excellence in America's Nursing Homes is a national campaign to improve the quality of life for residents and staff in America's nursing homes. The campaign's coalition includes long-term care providers, caregivers, medical and quality improvement experts, consumers, government agencies and other quality-focused organizations. The campaign focuses on quality improvement and self-regulation on the part of providers. The campaign acknowledges the critical role of both nursing home staff and consumers in improving quality of care and quality of life for nursing home residents. Participating consumers are promoting the Advancing Excellence in America's Nursing Homes campaign by encouraging nursing homes to sign onto the campaign and asking nursing home administrators if they are participating and which goals they have chosen. The campaign encourages nursing homes to seek and use consumer involvement to improve quality.
Alzheimer's AssociationThe Alzheimer's Association is the leading voluntary health organization in Alzheimer care, support and research. Its mission is to eliminate Alzheimer's disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. The Association provides information, education and support to consumers and operates a toll-free, 24/7 Helpline providing information, referrals and support in multiple languages at 1-800-272-3900.
American Association of Homes and Services for the AgingThe members of the American Association of Homes and Services for the Aging (AAHSA) consist of mission-driven, not-for-profit organizations dedicated to providing the services that people need, when they need them, in the place they call home. Our 5,700 member organizations, many of which have served their communities for generations, offer the continuum of aging services: adult day services, home health, community services, senior housing, assisted living residences, continuing care retirement communities and nursing homes. AAHSA's commitment is to create the future of aging services through quality people can trust. A section of the AAHSA website is devoted to consumers.
American Health Care Association
The American Health Care Association (AHCA) is a non-profit federation representing more than 10,000 non-profit and for-profit assisted living, nursing facility, developmentally-disabled, and subacute care providers that care for more than 1.5 million elderly and disabled individuals nationally. AHCA represents the long term care community to the nation at large – to government, business leaders, and the general public. It also serves as a force for change within the long term care field, providing information, education, and administrative tools that enhance quality at every level.
B & F Consulting
B & F Consulting helps consumers be partners in culture change. It provides training for advocates, with a special focus on helping consumers get a good start to their nursing home stay, understanding
operational issues that are key to individualizing care, and partnering with providers to individualize care.
Center for Excellence in Assisted LivingCEAL is a non-profit collaborative of 11 national organizations (including Pioneer Network) that aims to promote high quality assisted living and serve as a national clearinghouse, bringing together research, practices and policy that foster quality and affordability in assisted living. The CEAL Clearinghouse contains information for consumers about assisted living, among other topics.
Centers for Medicare & Medicaid Services Guide to Choosing a Nursing HomeThis official government booklet explains: how to find and compare nursing homes; how to pay for nursing home care; nursing home resident rights; and contact information for help. Resident-directed care and culture change are discussed on pages 24-25. Pioneer Network is listed as a culture change resource.
Centers for Medicare & Medicaid Services/Nursing Home Compare
The primary purpose of the Nursing Home Compare tool on the CMS web site is to provide detailed information about the past performance (based on annual inspection surveys) of every Medicare and Medicaid certified nursing home in the country.
Consumer Consortium for Assisted Living
CCAL is a national nonprofit consumer-based organization focused on the needs, rights and protection of assisted living consumers, their caregivers and loved ones. CCAL believes that advocacy action is necessary today to ensure quality care tomorrow; advocates for the safety, quality care and protection of assisted living residents; and educates consumers to help them navigate the confusing array of assisted living choices and make appropriate, informed decisions.
Eldercare Locator and
National Association of Area Agencies on Aging
Eldercare Locator provides referrals to Area Agencies on Aging via zip code locations. Family caregivers can also find information about many eldercare issues and services available in local communities.
Family Caregiver Alliance (FCA)FCA is a public voice for caregivers, illuminating the daily challenges they face, offering them the assistance they so desperately need and deserve, and championing their cause through education, services, research and advocacy.
From Institutional to Individualized CareA four-part webcast series developed for CMS training of surveyors, providers, quality improvement organizations and advocates on how to make the transformation to resident-centered care. It includes case studies shared by providers who made changes to their morning routine, meals, medication administration, alarm use, and other practices. Part Four focuses on consistent assignment, staff involvement, and achieving staff stability. Each part of the series is available under "Archived Webcasts" on the Survey & Certification Online Course Delivery System at:
http://surveyortraining.cms.hhs.gov/ and at Pioneer Network's
Store.
Long Term Care: You Decide
The University of Minnesota Center on Aging sponsors this consumer oriented program (supported by the Retirement Research Foundation). LTC DECIDE was created to help people who are largely unfamiliar with the options and implications of long-term care services to make more thoughtful and more satisfying decision at a time of crisis and uncertainty.
National Alliance for CaregivingAlthough not an organization that helps family caregivers directly, The National Alliance for Caregiving's website helps family caregivers learn about information, videos, pamphlets, etc. that have been reviewed and approved as providing solid information.
National Association for Home Care and Hospice
A trade association representing the interests and concerns of home care agencies, hospices and home care aide organizations. Website has a section for consumers.
National Hospice and Palliative Care OrganizationA membership organization representing hospice and palliative care programs and professionals in the United States. The organization is committed to improving end of life care and expanding access to hospice care with the goal of enhancing the quality of life for people dying in America and their loved ones. The website has sections on learning about end of life care and finding a provider.
National Association of Professional Geriatric Care ManagersGeriatric care managers (GCMs) are health care professionals, most often social workers, who help families in dealing with the problems and challenges associated with caring for elders. This national organization will refer family caregivers to their state chapters, which in turn can provide the names of GCMs in your area.
National Family Caregivers Association (NFCA)
The National Family Caregivers Association (NFCA) reaches across the boundaries of diagnoses, age, and relationship to address the common needs and concerns of all family caregivers. Through education, support and advocacy, NFCA empowers family caregivers to act on behalf of themselves and their loved ones, and works to remove the barriers that stand in the way of a family caregiver's health and well being.
NCCNHR: The National Consumer Voice for Quality Long-term Care
The National Citizens' Coalition for Nursing Home Reform (NCCNHR) was formed because of public concern about substandard care in nursing homes. The solid base for NCCNHR is its two hundred member groups with a growing individual membership of over 1,000. Members and subscribers to NCCNHR's information resources from 42 states comprise a diverse and caring coalition of: local citizen action groups, state and local long-term care ombudsmen, legal services programs, religious organizations, professional groups, nursing home employees' unions, concerned providers, national organizations, and growing numbers of family and resident councils. NCCNHR provides information and leadership on federal and state regulatory and legislative policy development and models and strategies to improve care and life for residents of nursing homes and other long term care facilities. NCCNHR affirms that long-term care facility residents, and families and friends of residents, should expect quality of care and life for themselves and/or their loved ones, and engage in advocacy efforts to raise the standards of care. NCCNHR's Consumer Guide to Choosing a Nursing Home provides tools that can be used by family members who are searching for a skilled nursing facility. The website also has consumer-friendly fact sheets on issues affecting residents such as residents' rights, malnutrition, the use of restraints, and changing the culture of long-term care facilities. NCCNHR also has a section of its website devoted to culture change.
U.S. Department of Health and Human Services National Clearinghouse for Long-Term Care InformationThe National Clearinghouse for Long-Term Care Information provides information on planning and financing long-term care including planning for end of life care, and all major types of public and private financing to help cover long-term care costs.