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Consumer Helpful Organizations and Websites

Administration on Aging: An agency of the U.S. Department of Health and Human Services. AOA is an advocate agency for older persons and their concerns at the federal level. AOA uses Older Americans Act funds to contract with a nationwide network of State Units on Aging which in turn contract with local Area Agencies on Aging (AAA) to plan and coordinate aging services at the local level.

Advancing Excellence in America's Nursing Homes
: A 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 is designed to strengthen the public trust in nursing home care by focusing on quality improvement and self-regulation. The campaign acknowledges the critical role of nursing home staff and consumers in improving quality of care and quality of life for nursing home residents.

Alzheimer's Association
: The leading voluntary organization in Alzheimer's care, support and research.

The American College of Health Care Administrators (ACHCA)
: ACHCA is a non-profit professional membership association that aspires to be the leading force in promoting excellence in leadership among long-term care administrators.

American Health Care Association (AHCA)
: A federation
of affiliated state health organizations, together representing more than 10,000 nonprofit and for-profit assisted living, nursing home, developmentally-disabled, and subacute care providers that care for more than 1.5 million older and disabled individuals nationally.

AMDA – Long-Term Care Medicine
: As the professional association of medical directors, attending physicians, and others practicing in the long-term care (mostly assisted living and nursing homes), AMDA is dedicated to excellence in patient care and provides education, advocacy, information, and professional development to promote the delivery of quality long-term care medicine. 

Caregiver.com
: Caregiver Media Group provides
information, support, and guidance for family and professional caregivers. They produce Today's Caregiver magazine and a web site, caregiver.com, which includes topic-specific newsletters, online discussion lists, back issue articles of Today's Caregiver magazine, and chat rooms. Caregiver Media Group and all of its products are developed for caregivers, about caregivers and by caregivers.

Caring Connections
: A program of the National Hospice and Palliative Care Organization (NHPCO), to improve care at the end of life, supported by a grant from The Robert Wood Johnson Foundation. Provides information on advance directives, living wills, and medical (healthcare) power of attorney based on the laws and requirements of your state.

CCAL-Advancing Person-Centered Living
: CCAL is a national education and advocacy organization focused upon the implementation of principles, research, policies, and programs to foster person-centered living in the community and in assisted living.

CEAL- Center for Excellence in Assisted Living
: CEAL promotes high-quality assisted living, serves as a convener to bring together diverse stakeholders to discuss and examine issues related to assisted living, helps bridge research, practice, and policies that foster quality and affordability, and maintains an objective national clearinghouse of information and resources about assisted living.

The Coalition of Geriatric Nursing Organizations (CGNO)
: CGNO represents over 28,700 geriatric nurses seeking to improve the health care of older adults across care settings and is supported by the Hartford Institute for Geriatric Nursing, located at New York University College of Nursing.

Eden Alternative
: An international not-for-profit organization dedicated to transforming care environments into habitats for human beings that promote quality of life for all involved. It is a powerful tool for inspiring well-being for Elders and those who collaborate with them as Care Partners.

Eldercare Locator
: A public service of the Administration on Aging, U.S. Department of Health and Human Services, Eldercare Locator is a nationwide service that connects older Americans and their caregivers with information on senior services. The Eldercare Locator is designed to help older adults and their families and caregivers find their way through the maze of services for seniors by identifying local support resources. The goal is to provide users with the information and resources they need that will help older persons live independently and safely in their homes and communities for as long as possible.

Family Caregiver Alliance
: A public voice for caregivers. FCA's pioneering programs—information, education, services, research, and advocacy—support and sustain the important work of families around the country who are caring for loved ones with chronic, disabling health conditions. The National Center on Caregiving (NCC), established in 2001 as a program of Family Caregiver Alliance, works to advance the development of high-quality, cost-effective policies, and programs for caregivers in every state in the country. Uniting research, public policy and services, the NCC serves as a central source of information on caregiving and long-term care issues for policy makers, service providers, media, funders, and family caregivers throughout the U.S.

The GREEN HOUSE® Project
: A project that supports the development and implementation of small, intentional ("purpose-built") "Green House communities for a group of elders and staff. A Green House residence is designed to be a home for six to ten elders needing skilled nursing or assisted living care. The purpose is to avoid institutionalizing long-term care and be a place where elders can receive assistance and support with activities of daily living and clinical care, without the assistance and care becoming the focus of their existence.

Home Health Compare
: Developed and maintained by the Center for Medicare and Medicaid Services, this tool provides information about the quality of care in home health agencies all across the country.

LeadingAge, formerly AAHSA
: The members of LeadingAge provide services to individuals and their families every day through mission-driven, not-for-profit organizations and care settings. The 5,700 members of this organization 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.

LongTermCareLiving.com: LongTermCareLiving.com provides consumers with needed information on planning, preparing and paying for long-term care. It includes information on nursing homes, assisted living, residential care, and other types of long-term care. It is sponsored by the American Health Care Association (AHCA) and the National Center for Assisted Living (NCAL).

Medicare.gov: A federal government website managed by the Centers for Medicare & Medicaid Services

National Association of Area Agencies on Aging (N4A)
: N4A is the national umbrella organization advocating to ensure that needed resources and support services are available to older Americans through the Area Agencies on Aging. See definition of Area Agencies on Aging above.

National Center for Assisted Living (NCAL)
: This is the assisted living component of the American Health Care Association (AHCA). This organization of assisted living providers works to advocate, educate, and network for and with members. It also provides professional development, national lobbying, and quality initiatives for the assisted living provider community. In addition to national advocacy, NCAL supports state-specific advocacy efforts through its national federation of state affiliates. NCAL state affiliates work to create local education, advocate on behalf of assisted living providers, and provide the direct, ongoing support their assisted living members need to improve quality and grow their businesses.

National Center on Elder Abuse (NCEA)
: A national resource center dedicated to the prevention of elder mistreatment. Directed by the U.S. Administration on Aging, the NCEA is committed to helping national, state, and local partners in the field be fully prepared to ensure that older Americans will live with dignity, integrity, and independence, and without abuse, neglect, and exploitation. The NCEA is a resource center for elder rights advocates, health, aging, and social services professionals, APS (Adult Protective Services), law enforcement, legal professionals, public policy leaders, researchers, and others working or on behalf of older individuals who have experienced, or who are at risk for, elder mistreatment. 

National Clearinghouse for Long-Term Care
: This website was developed by the U.S. Department of Health and Human Services to provide information and resources to help you and your family plan for future long-term care (LTC) needs. It is primarily intended as an information and planning resource for individuals who don't yet require long-term care, but it includes information on services and financing options that can be helpful to all individuals.

The National Consumer Voice for Quality Long-Term Care (formerly NCCNHR)
: The Consumer Voice's mission is to represent consumers at the national level for quality long-term care, services, and supports. This organization, which has been in existence for more than 30 years, provides information and leadership on federal and state regulatory and legislative policy development as well as models and strategies to improve care and life for residents of nursing homes and other long-term care settings. NCCNHR stands for National Citizens' Coalition for Nursing Home Reform, the former name of this organization. The organization also supports and maintains the National Long-term Care Ombudsman Resource Center.

National Family Caregivers Association (NFCA)
: National nonprofit organization that educates, supports, empowers and speaks up for the more than 50 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age. NFCA reaches across the boundaries of diagnoses, relationships, and life stages to help transform family caregivers' lives by removing barriers to health and well being.  NFCA's core Caring Every Day messages are Believe in Yourself, Protect Your Health, Reach Out for Help, and Speak Up for Your Rights.

National Hospice and Palliative Care Organization (NHPCO)
:  The largest nonprofit 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 profoundly enhancing quality of life for people dying in America and their loved ones.

National Long-Term Care Ombudsman Resource Center: Ombudsmen are dedicated to enhancing the lives of long-term care residents. This national nonprofit organization provides support, technical assistance and training to fifty-three state Long-Term Care Ombudsman programs and their statewide networks of almost 600 regional (local) programs. There are also nationally almost 9,000 volunteer ombudsmen. The Center's objectives are to enhance the skills, knowledge, and management capacity of the state programs to enable them to handle residents' complaints and represent resident interests (individual and systemic advocacy). Funded by the Administration on Aging (AoA), the Center is operated by The National Consumer Voice for Quality Long-Term Care, in cooperation with the National Association of State Units on Aging (NASUA).

Nursing Home Compare: Developed and maintained by the Center for Medicare and Medicaid Services, this tool has detailed information, based on the annual surveys, about every Medicare- and Medicaid-certified nursing home in the country so that you can find and compare homes. The Five Star Rating System for nursing homes can be found here.

Picker Institute: Picker Institute is an independent nonprofit organization dedicated to advancing the principles of patient-centered care. In cooperation with educational institutions and other committed entities and individuals, Picker Institute sponsors awards, research and education to promote patient-centered care and the patient-centered care movement.

Planetree: Planetree is a non-profit organization that provides education and information in a collaborative community of healthcare organizations, facilitating efforts to create patient-centered care in healing environments. There is a Planetree model for continuing care, made up of ten components that promote healing, person-centered communities.

United Hospital Fund: Next Step in Care: The mission of the nonprofit United Hospital Fund (UHF) is to shape positive change in health care for the people of New York. The Fund works to advance policies and support programs that promote high-quality, patient-centered healthcare services that are accessible to all persons across the full spectrum of care. The Next Step in Care campaign is one of the Fund's many initiatives to improve patient care, especially for those most vulnerable. It is taking shape in New York, but is envisioned as national in scope. 

Wellspring: The Wellspring Program has assisted nursing homes throughout the country in advancing excellence in their settings by offering education, guidance, and tools to nursing homes to assist in culture change. Wellspring primarily focuses on strengthening clinical and managerial skills of staff, empowering residents and frontline staff, and creating a high quality of life for residents. One of the strengths of Wellspring is that it enables nursing homes to effect culture change within their existing physical plant and wherever they are along the continuum of change. Wellspring is based on the core principles that care decisions need to take place at the level closest to the resident, a substantial knowledge base is required by all staff to equip them to participate in decision making, and an empowered workforce increases resident and employee satisfaction and reduces staff turnover.


Note: The above Definitions and Resources are not intended as an exhaustive or authoritative reference source but are provided only to inform readers of websites that may provide information of interest. The websites listed above contain information created, published, maintained or otherwise posted by organizations independent of Pioneer Network. Pioneer Network does not endorse, approve, certify or control these websites, nor any commercial product or service referenced therein, and does not guarantee the accuracy, completeness, efficacy or timeliness of information located therein.