What Families Should Know About Decision-Making Rights in Long-Term Care
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Life’s interesting. The dynamics between parents and their children shift very slowly and then, sometimes, all at once. It can be beautiful; it can be demanding — that’s life. For adult children, navigating a senior parent’s later-in-life living and care can be a sensitive subject. Relationships evolve, and health concerns can impair judgment. A child becoming newly responsible for their parent’s finances and housing can reveal just how much assistance is needed at any given time. That’s why we encourage conversations well before a health scenario creates even more stress and a truncated time to make a decision. There’s also a legal element: parents still get to decide a lot of the particulars, even in assisted care. The tension between autonomy and caregiving should be heavily considered throughout a life transition. That tension shows up in small, unglamorous moments — who signs off on a medication change, who gets a say if a visit needs to be rescheduled — long before it shows up in bigger decisions like a lease, a listing, or a move. Here’s what to know about decision-making rights.
Decision-Making Rights
Under federal law, residents of long-term care facilities have broad rights to make decisions about their own lives — including the right to participate in care planning, control the health care and medication they receive, accept visitors at any hour of the day or night, and vote. In practice, the visitation right is one families lean on most — it’s what keeps a parent from feeling cut off from the people who know them best.
California law adds more specific protections. According to CANHR (California Advocates for Nursing Home Reform), which draws on both federal nursing home regulation (42 CFR §483.10) and California Code of Regulations Title 22 §87468.1, residents have the right to retain and use their own clothing and personal possessions, and the right to accept or refuse medical treatment. Facilities are also generally required to allow visitors within reasonable hours, even without advance notice.
It’s easy to imagine the complications of knowing who should make what decision, in the heat of the moment, with any extra stress or emotion involved.
Making Decisions Before Making a Move
The transition to long-term care can be a long process. Extra time and consideration are often helpful to formulate questions, voice concerns, and plan for contingencies. Here are a few questions a family can bring to a facility tour or an elder-law consultation:
- Who is involved in care-planning meetings, and can family attend?
- What does the facility’s medication-decision process look like?
- Are there restrictions on visitors, and under what circumstances?
- Who do we talk to if a decision doesn’t feel right?
This last one is worth sitting with. California has a Long-Term Care Ombudsman Program, overseen by the California Department of Aging through the Office of the State Long-Term Care Ombudsman, with local ombudsman programs covering every county in the state. Their job is to step in and advocate when a resident or family feels unheard — it’s worth asking a facility, before move-in, how they connect residents to that resource.
It’s always important to ask, clearly, who will be deferred to at each step in the process.
Who Else Should Be at the Table
If you’re in the process of a life transition (or helping a family member in theirs), you are not alone. At the start, it’s important to build relationships with professionals who can advise and assist along the way. An elder-law attorney, a fiduciary, or a senior care manager are all great resources for your team. Broadly speaking: the attorney handles legal instruments like powers of attorney and health care directives, the fiduciary manages finances and decisions when someone can’t do it themselves, and the care manager coordinates day-to-day logistics — what’s available, what fits, and how to get it set up. Personally, and as a real estate professional, I maintain a network of these types of service providers, to stay up on changing information, resources, and laws. Looping them in early helps avoid scrambling later.
Where to Go Deeper
If you’re looking for more information about California decision-making rights, Justice in Aging — a national legal advocacy organization focused on older adults — is
hosting a webinar on Tuesday, September 8 at 2pm. You may not find answers to your immediate questions there, but I always believe curiosity is key. The further you inquire, the more you know, and the better your chances of finding the answer, or someone who can help clarify it.
I’m not a legal or care expert, but I’m often the first call when a family starts this process. A family home — and the wealth tied up in it — is often integral to how care gets financed and decided. Part of my job is making sure my clients have the right people in the right advisory and decision-making roles before the moving truck shows up.
If you’re in the middle of this right now — touring facilities, trying to figure out who gets a say in what — I’d love to talk it through. Knowing the timeline and the condition of the family home can make those harder conversations easier, whether that’s next year or next month.
With care,
Eloise
510-386-0547 | eloise@homesbyeloise.com
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