Decision-Making Rights in Nursing Homes and Assisted Living Facilities

Takeaways

• Nursing home and assisted living residents generally retain the right to make decisions about their care and daily lives.

• Residents should participate actively in care planning, medication decisions, visitation, and voting.

• Families can help residents assert their rights and seek assistance when a facility fails to honor them.

Moving into a nursing home or assisted living facility doesn’t mean giving up the right to make informed decisions about your life. Federal law gives residents broad authority over their care, their visitors, their medications, and their right to vote. However, many residents don’t know these rights exist or don’t feel they are able to exercise them. Here’s what the law says and how residents and their families can put it into practice.

The Legal Foundation: The Nursing Home Reform Law of 1987

Every nursing home that is certified to participate in and receive payment from Medicare or Medicaid must follow the Nursing Home Reform Law of 1987, regardless of how any individual resident pays for their own care. The law requires facilities to help each resident “attain or maintain the highest practicable physical, mental, and psychosocial well-being.”

Assisted living residents’ rights are governed somewhat differently from nursing home residents’ rights, since assisted living facilities are largely regulated by state law. However, facilities that accept Medicaid home- and community-based services (HCBS) funding must follow federal HCBS settings rules, built around the same goal of providing dignity, autonomy, and a living environment that feels like a home.

Why Residents Don’t Always Push Back

If these protections are so clear, why do so many violations go unchallenged? A few reasons come up again and again:

• Residents often don’t know their rights. Although facilities may post notices, a resident may not pay attention or understand it.

• Residents may defer to a facility’s staff and administration, assuming the people running a large, established operation must know best.

• Fear of confrontation, or, more seriously, fear of retaliation, keeps many residents from speaking up, especially since they can depend on the same staff day and night for months or years.

• Repeated mistreatment can create a culture of quiet acceptance, where residents conclude there’s no point in objecting.

• Isolation from the outside world leaves many residents with little outside support or perspective to draw on.

When residents let problems slide, the consequences can compound. Care quality may decline, residents might feel despondent and isolated, and, without anyone holding a facility accountable, any violations only tend to get worse. Speaking up, even about something that seems minor, is part of what keeps facilities accountable.

Keeping Residents at the Center of Care Planning

One of the strongest tools a resident can have is a developed, person-centered care plan. Federal regulations define person-centered care planning as placing the resident at the “locus of control.” This is not merely a formality to be signed off on. The resident should actively participate in its creation, alongside their family or representative.

A meaningful care plan should go well beyond a checklist of diagnoses and medications. It should also cover:

• Medical needs, including even minor treatments like a heating pad or elevating a limb

• Nutrition, including dietary restrictions and religious or cultural food preferences

• Visitation and social preferences, such as when a resident is most alert for visitors

• Physical, behavioral, and cognitive supports, from mobility devices to communication aids

• The resident’s goals, including those related to a transfer or discharge, leaving the facility, or moving to a less restrictive setting

• Personal preferences and hobbies that help a resident feel like themselves, not just a patient

By law, a baseline care plan must be in place within 48 hours of admission, followed by a comprehensive, person-centered plan within seven days after completing the initial resident assessment. The planning team must include the resident’s physician, nursing staff, dietary staff, and any other professionals the resident requests. The resident’s representative, if applicable, must be included to the extent practicable. If they can’t attend, the facility should offer accommodations such as a different meeting time or a video call.

Residents and families can advocate for a better process by:

• Asking for enough time. Requesting 45 minutes to an hour rather than accepting a rushed 15-minute meeting is reasonable.

• Bringing a written list of goals and preferences, covering more than just clinical needs.

• Requesting a written copy of the care plan and any subsequent updated plans.

A care plan should not be treated as a one-time formality. Revisit it regularly, especially for residents whose needs or cognitive abilities are changing.

Visitation Rights

Residents have the right to choose who visits them and when. Immediate access must be provided to their      legal representative, ombudsman, protection and advocacy representative, physician, and family members. Other visitors must receive reasonable access with the resident’s consent.

In Medicaid HCBS-funded assisted living and similar settings, visitation must be essentially unrestricted. Any exceptions must be justified and documented.

Restrictions that generally aren’t allowed but are often applied include:

• Capping the number of visitors per day or limiting who may visit

• Enforcing rigid visiting hours or maximum visit lengths

• Requiring advance scheduling

Legitimate visitation limits are narrow and may include a resident’s own request for no visitors, a restriction      in their care plan, or a written policy addressing a genuine clinical or safety concern. Even then, these justifications should not be accepted automatically.

Informed Consent for Medication

Residents have the right to be informed about a medication’s purpose, benefits, and risks before consenting to take it. This is often a private conversation between facility staff and a physician, leaving out residents and their families.

Guidance issued by the Centers for Medicare & Medicaid Services in early 2025 reinforced this right, confirming that residents may accept or decline a new medication or a dosage increase. Before a medication is started or increased, residents must be informed of its risks, benefits, and alternatives and may accept or decline it. Surveyors may cite facilities that lack documentation of this informed-consent process.     

This is especially important for antipsychotic medications, which have historically been used to sedate or subdue residents rather than treat a diagnosed psychiatric condition. Insisting on informed consent can prevent inappropriate medication and arguing after the fact whether a drug was medically necessary.

Voting Rights

Residents retain the right to vote and, if they choose, to get help from a family member or another person of their choosing. Recent federal guidance reaffirmed this right while making clear that facilities may not      influence how a resident votes or cast ballots on their behalf.

With Election Day approaching, residents and families should check their state’s rules regarding registration and vote-by-mail. Mail voting is automatic in some states but other states require a specific request. Facilities and families can help a resident register, request a ballot, or arrange transportation to a polling place.

If Rights Aren’t Being Honored

Residents and their families can raise any concerns directly with staff, contact the facility’s long-term care ombudsman, file a complaint with the state survey agency, work with a resident or family council, or consult a legal services attorney. Persistence matters, since many resolutions come only after sustained follow-up.

Additional Reading

For additional reading on issues related to nursing homes and assisted living facilities, check out the following articles:

• What Are Nursing Home Residents' Rights?

• When Is a Nursing Home Eviction Legal, and What Can I Do?

• Fighting an Assisted Living Discharge

• Assisted Living vs. Nursing Homes: What's the Difference?