The National Consumer Voice for Quality Long-Term Care

NCCNHR: The National Consumer Voice for Quality Long-Term Care

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Founded	1975
Founder	Elma Holder
Focus	Elder Care in Long-term Residential Facilities
Area served	United States
Method	Advocacy
Members	788
Revenue	Grants and Donations
Employees	10
Volunteers	3
Website	www.nccnhr.org

NCCNHR: The National Consumer Voice for Quality Long-Term Care (formerly the National Citizens’ Coalition for Nursing Home Reform) is the national voice to improve the quality of care for long-term care consumers. NCCNHR is the source for long-term care education, advocacy and policy analysis at both the state and federal level. NCCNHR’s ongoing work addresses issues such as: Inadequate staffing in nursing homes, particularly all levels of nursing staff Poor working conditions, salaries and benefits for long-term care workers Maintenance of residents' rights and empowerment of residents Support for family members and development of family councils Development and support for the long-term care ombudsman program Minimizing the use of physical and chemical restraints The high cost of poor care, such as pressure sores, dehydration, incontinence and contracture of residents' muscles Accountability to taxpayers for nursing home expenditures and failure to fulfill government contracts

History and Mission

Overview

NCCNHR is the outgrowth of work first achieved by advocates working for Ralph Nader and later for the National Gray Panthers. Elma Holder, NCCNHR Founder, was working with The Long Term Care Action Project of the Gray Panthers when she organized a group meeting of advocates from across the country to attend a nursing home industry conference in Washington, D.C. in 1975. At that meeting, representatives of 12 citizen action groups spoke collectively to the industry about the need for serious reform in nursing home conditions. The consumer attendees were inspired to develop a platform of common concerns and motivated to form a new organization to represent the consumer voice at the national level. Most of the original members had witnessed and endured personal experiences with substandard nursing home conditions.

• 1975
  • The Coalition is formed when various citizen groups and ombudsman programs, convened by the National Gray Panthers' LTC Action Project, gather in Washington, D.C., in June. Prior to attending a conference sponsored by the American Health Care Association, the groups meet to become acquainted and to develop recommendations to present at the conference in a united consumer voice.
  • The Coalition holds its first press conference, attended by Dr. Arthur Flemming, Commissioner on Aging.
• 1978
  • The Coalition issues its first paper, The Plight of the Nurse Aide in America's Nursing Homes. A preliminary report on nursing home costs issues also is released. Both are circulated widely to health care professionals, state and national organizations, state government agencies, and nursing homes.
  • During the Coalition's second annual meeting, reaction and comments are issued on proposed changes federal nursing home rules. Also that day, Rep. Claude Pepper, chair of the House Select Committee on Aging, addresses the Coalition.
  • The Coalition receives a three-year grant from Volunteers in Service to America (VISTA) to recruit, train, and place 40 volunteers in 13 project sites, strengthening local and state member groups toward a stronger national network.
• 1981
  • The Coalition's Information Clearinghouse expands to include board and care issues. The Clearinghouse thrives thanks to a grant from the Administration on Aging. Today, it receives major support from the American Association of Retired Persons.
  • The Coalition conducts a national survey on Medicaid discrimination, issuing a report on the scope of the problem and avenues for resolution. A Citizens' Action Guide to Reimbursement Issues also is published, introducing consumers to reimbursement principles and strategies for promoting quality through the reimbursement system
• 1983
  • The Coalition issues, with 43 national organizations and individuals, A Consumer Statement of Principles for the Nursing Home Regulatory System, following the 1982 release of proposed federal regulations that threatened to severely weaken nursing home monitoring.
  • Responding to the Coalition's statement and congressional directives, the Institute of Medicine launches a study of nursing home regulations. IOM study committee members invite the Coalition to several briefings and work sessions, and commission two Coalition papers on resident and consumer participation.
• 1985
  • The Coalition publishes A Consumer Perspective on Quality Care: The Residents' Point of View. For this seminal report, the Coalition convened small groups of residents in 15 states, who described their vision of quality nursing home care.
  • A Consumer Perspective is released during a National Symposium on Quality Care in Clearwater Beach, Fla. Seventeen of the participating residents join researchers, educators, advocates, practitioners and public officials to respond to residents' views and chart ways to achieve quality care.
• 1986
  • In response to the IOM report, Improving the Quality of Care in Nursing Homes, Elma Holder launches the Campaign for Quality Care (CBC), bringing together national groups representing various health professions, workers, providers, and consumers, to develop consensus positions to recommend to Congress in a forum hosted by Sen. John Heinz. Some 10 years later, CBC continues to meet monthly to find common ground on a range of long-term care issues.
  • The Coalition begins publishing the Quality Care Advocate .
• 1987
  • The Coalition presents the Campaign for Quality Care's views to Congress during a session hosted by Sen. David Pryor, who helped craft landmark nursing home reforms. The Coalition steers a national movement for passage of the 1987 Nursing Home Reform Act, comprised of amendments in the federal budget bill, the Omnibus Reconciliation Act of 1987 (OBRA '87). Congressional sponsors Sen. George Mitchell and Reps. John Dingell, Pete Stark, and Henry Waxman hold hearings, where national organizations testify in support of the Campaign's consensus positions.
  • With bipartisan support, Congress passes the Nursing Home Reform Act on Dec. 22. Elma Holder and Barbara Frank call it "a tremendous victory for residents and for all those groups who worked so hard for so long."
• 1990
  • Advocating full implementation of the Reform Act, the Coalition mails time analysis and consumer viewpoints on the latest drafts of standards to state ombudsmen and licensure directors.
  • The Coalition issues two major publications on the Nursing Home Reform Act: The Basics and The Ombudsman's Guide familiarizing readers with the law and its impact on daily nursing home life.
  • The Coalition helps persuade a federal district court to rule that limited Medicaid-bed certification violates the U.S. Civil Rights Act. Attorney Gordon Bonnyman, 1994-1996 board member, brought the case, Linton v. Tennessee, on plaintiffs' behalf.

Board Members

NCCNHR's current 20-member board, which includes residents of nursing homes, represents the grassroots membership of concerned advocates of quality long term care nationwide. The board is elected by consumer-controlled member groups and meets four times a year to establish policies and to help direct financing and programming issues.

The NCCNHR Board of Directors for 2008-2009 are: President, Norma Harrison Atteberry; Past President, Alison Hirschel; Vice-President, Robyn Grant; Treasurer, John Weir; Resident Member, Lynn Miller; and Secretary, Sherry Huff Culp.

Membership

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.

Programs and Resources

Ombudsman

An Ombudsman is an advocate for residents of nursing homes, board and care homes, and assisted living. Ombudsmen provide information about how to find a facility and what to do to get quality care. They are trained to resolve problems. If you want, the ombudsman can assist you with complaints. However, unless you give the ombudsman permission to share your concerns, these matters are kept confidential.

Under the federal Older Americans Act, every state is required to have an Ombudsman Program that addresses complaints and advocates for improvements in the long term care system. To find the ombudsman nearest you, contact your State Ombudsman office.

Citizen Advocacy

Citizen advocacy groups are groups of concerned citizens who work to improve the quality of care for nursing home residents in their locality, state, or region. These groups can be very well established organizations with budgets, staff people, and offices or can be as small as a group of concerned citizens who meet around the kitchen table to share information and strategize about how they can work to improve the quality of care in their community.

Members of these groups are often people who have had loved ones in nursing homes and are concerned about nursing home residents. Despite their diversity, all of 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 nursing home reform in your state.

Family Councils

Family members in a facility can join together to form a united consumer voice which can communicate concerns to the facility administrator and work for resolutions and improvements by forming a family council. The 1987 Nursing Home Reform Act guarantees the families of nursing home residents a number of important rights to enhance a loved one’s nursing home experience and improve facility-wide services and conditions. Key among these rights is the right to form and hold regular private meetings of an organized group called a family council. Family councils can play a crucial role in voicing concerns, requesting improvements, supporting new family members and residents, and supporting facility efforts to make care and life in the facility the best it can be. Join and support the family council at your loved one's facility! If no family council exists, join with other family members to form one. NCCNHR: The National Consumer Voice for Quality Long-Term Care, has a great deal of information available on their website related to family councils, family council rights that are protected by federal law, regulations applying to long-term care facilities, effective council advocacy, and tools for forming an effective council. Visit www.nccnhr, and the Family Council Center: http://www.nccnhr.org/public/50_152_496.cfm to learn more about Family Councils.

NCCNHR (formerly the National Citizens’ Coalition for Nursing Home Reform) is a nonprofit membership organization founded in 1975 by Elma L. Holder to protect the rights, safety, and dignity of America’s long-term care residents.

Annual Conference

National Conference and Annual Meeting [3] is for everyone who cares about quality long-term care - residents, family members, citizen advocates, paid and volunteer ombudsmen, attorneys, social workers, certified nursing assistants, nurses, government officials and employees, NCCNHR members and non-members.

References

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