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Advocacy in Long-Term Care

Last month, long-term care providers celebrated “Residents’ Rights” month.  Any effort to improve the quality of care for individuals receiving long-term care services requires that consumers, families, service providers, and other interested parties understand the protections outlined in the federal 1987 Nursing Home Reform Law.  In addition, some states have their own specific regulations relating to the services provided in nursing homes, personal care and assisted living facilities, adult day centers, and other types of board and care facilities.  Information about and support for these protections is available at the local, state, and national level.

The rights outlined for nursing home residents in the 1987 federal law were designed to ensure dignity, choice, and self-determination for this population.  These rights fall into eight general categories, which are summarized as follows:

  • Full disclosure – Residents must be notified of available services and the fees for each service, facility regulations, state survey results, and plans for a room or roommate change.  This information must be available in a language that the resident understands.
  • Complaints – Residents must be allowed to share grievances with staff, the local ombudsman, or state agencies without fear of retaliation.  Facilities must make prompt efforts to resolve these grievances.
  • Provision of care – Residents should expect appropriate care and be allowed to participate in the planning and execution of this care (as they are able).  They have the right to be informed of any changes in their medical conditions, refuse medications or treatments, and review their medical record.
  • Privacy and confidentiality – These are to be maintained during the hands-on provision of care as well as during any discussion or sharing of medical, personal, and financial information.  All residents have the right to private and unrestricted communication with whomever they choose.
  • Transfers and Discharges – Specific situations are outlined which allow facilities to initiate a transfer or discharge, such as changes in resident condition (either improvement or decline), issues related to the health and safety of other residents or staff, and nonpayment for services provided at the resident’s request.  Transfers and discharges are expected to be handled in a safe manner, and a resident may appeal the decision.
  • Dignity – All residents are to be treated with dignity and respect.  They are to be free of restraints, abuse, and involuntary seclusion.
  • Visits – Residents may see whomever they choose, including family; friends; personal physician; organizations providing legal, social, or other services; and representatives from state agencies.  They can also refuse visitors.
  • Making Choices – When able, residents should be encouraged to make independent decisions about such things as what to wear, who will be their physician, and activities both inside and outside the facility.  They should expect a facility to make reasonable accommodation for personal needs and preferences and allow for the independent management of financial affairs.

On a national level, the Residents’ Rights celebration is spearheaded annually by The National Consumer Voice for Quality Long-Term Care, a group that works to increase awareness and encourage the support of the rights of individuals who are receiving long-term care.  This group formed in 1975 as the National Citizens’ Coalition for Nursing Home Reform when advocates recognized a need for a national organization to focus on improving the quality of care in nursing homes.  Currently, the organization seeks to empower consumers to advocate for themselves and provide support for individuals and entities who assist consumers with this task through education, training, identification of best practices, and discussion of public policy issues.

This year’s theme for Residents’ Rights month was “Care Matters”.  The National Consumer Voice for Quality Long-Term Care asked long-term care residents around the country to submit “40 words of wisdom on the theme”.  Congratulations to two residents of Forest Park Nursing and Rehabilitation Center in Carlisle, and a resident group from Falling Spring Nursing and Rehabilitation Center in Chambersburg, whose submissions appear on the organization’s website (

Next week’s article will explore the role of Cumberland County’s local ombudsman program in supporting residents’ rights.

Karen Kaslow, RN, BSN