Family becomes the voice for those who are incapacitated.

The rights of people receiving long-term care must be of highest importance in designing care and services that meet their needs. Every person who receives long-term care has human and civil rights and specific consumer rights. If the person receiving care cannot speak for themselves, the family or other caregiver must be alert for any signs that something isn’t right. The long-term care provider must supply a copy of the recipient’s rights, which the family should become familiar with. It is the family’s right to speak out if any rights are being infringed upon.

Each state has a unique residents bill of rights and health licensing regulations (or the equivalent thereof). Despite variances among them, all should include references to freedom from abuse, dignity and respect in treatment of resident, and participation in planning and care. These laws and regulations are typically vague, leaving the state survey agency to interpret whether they comply.

A CAUTIONARY NOTE: Many providers of long-term care "require" a "pre-dispute arbitration agreement" as a part of their admissions process.   The National Consumer Voice for Quality Long-Term Care has published a fact sheet for consumers and families advising against signing an “arbitration agreement” upon admission to a long-term care facility, and explaining why this practice strips residents and legal representatives of their rights.

All types of long-term care that accept Medicare or Medicaid (nursing homes, assisted living, home health, home and community based services) must meet federal regulations that provide specifically for the rights of consumers. Federal nursing home regulations serve as an exemplar for this discussion, because they clearly reveal that even in the most intensive care situation—often called the “most restrictive environment” in the array of long-term care settings—the individual rights of the consumer are paramount. The other types and settings of long-term care must also prioritize these rights, and should do so regardless of the location or pay source for the care. Therefore an understanding of these rights can empower advocacy for rights in any care setting.

The regulations are much more specific for long-term care providers that accept consumers whose care is paid by Medicare or Medicaid. The provider may not fully realize that the regulations go beyond only consumers funded by federal programs. According to the Code of Federal Regulations, any long-term care facility participating in a federal funding must provide that quality of care and services to all who receive services—not just those receiving the Medicare or Medicaid benefits. The text below is taken directly from the Code of Federal Regulations:

§ 483.15 Admission, transfer and discharge rights.  (b) Equal access to quality care. (1) A facility must establish and maintain identical policies and practices regarding transfer, discharge, and the provision of services under the State plan for all individuals regardless of source of payment.

The facility social worker typically has the responsibility of reviewing and explaining these rights to the resident and the family and assisting with follow-up.  In cases where the loved one is incapacitated, someone authorized as a power of attorney, legal representative, or family representative has the primary responsibility of exercising the rights on behalf of the resident.  Other family members should work with that designated representative in addressing questions and concerns about resident rights and advocating for them.

Practicalities of Resident Rights

Residents in long-term care have the right to a dignified existence. A huge part of that existence has to do with all those things the person gave up when they moved into the facility, i.e. their home, daily/weekly routines, and personal choices. They also have the basic right to self-determination, to have a say in what happens during a routine day.  Even such mandated schedules as meal, bed, and bathing times can and should be adjusted within reason to accommodate individual preferences.

An often misunderstood and undervalued right is communication.  One aspect of communication crucial to the resident’s quality of life is his/her need to communication with staff.  A resident who has lost the ability to speak or to verbalize clearly through loss of function dementia has not lost the ability to communicate. They communicate very clearly using nonverbal cues: emotions, body language and behavior. While family and caregivers typically learn to interpret those nonverbal cues, and can respond correctly, some facility staff may interpret them as problem behaviors or agitation. Staff may resort to medicating them into compliance rather than “listening” to their true meaning and responding accordingly.  This use of medication instead of attending to the communication of the resident is a violation of the rights of the resident.

The Code of Federal Regulations, Section 483.10, lists rights which must be afforded nursing home residents.  A facility must protect and promote the rights of each resident, including those we have summarized briefly below.

PLEASE NOTE THAT THE TERMS "RESIDENT" AND/OR "INDIVIDUAL" APPLY EQUALLY TO THE POWER OF ATTORNEY OR LEGAL GUARDIAN if the resident cannot independently exercise their rights.