Chances are, if you’re caring for a loved one with dementia, at some point you’ll have to advocate for them. Trying to get them the services you think they need. Helping with discharge planning. Making sure staff is following through on their care plan.
There’s so much that goes into making sure other health care providers and systems are also caring for your loved one with dementia.
This is one of my favorite interviews I have ever done. I talked with Bob Mannor, a certified elder law attorney in Michigan whose practice does something I had never heard of another practice doing. And he shared, step by step, how family members can do it themselves, even if they never hire a lawyer.
Bob is licensed in Michigan, and he said again and again that every state is a little different. So use this as a map of what to ask about, and check the rules where you live. Here’s what he shared.
What a Dementia-Focused Elder Law Practice Does
Bob calls his firm a dementia focused practice. He noticed that many of the people they help have some form of dementia, so they started building the practice around it.
Part of that is the legal and financial work. And that matters, Bob says, because when he was in law school there was no such thing as elder law. Most lawyers have very limited training in the unique legal issues of dementia or long-term care, and things often should be set up differently when someone has a dementia diagnosis. (For one of those documents, I talked with California elder law attorney Jane Allison Austin about power of attorney and dementia.)
The other part is what he calls care navigation. Families usually come in worried about how they’ll pay for care. But that’s only one of their concerns. They also want to know that mom will live the rest of her life with dignity, that she’s getting the best care possible, that they know all their options, and that they aren’t getting pushed around the health care system.
So his office has care advocates, social workers who work alongside the attorneys. The idea is to bring the legal, the financial and the advocacy together.
When Your Loved One Is Rushed Out of the Hospital
Bob gave two examples of this kind of advocacy.
The first is the crisis. A fall, wandering, something that lands your loved one in the hospital. Bob doesn’t say this to be disparaging, but hospitals tend to rush people out. If you’re lucky there’s an option for rehab, physical, occupational or speech therapy in a skilled nursing facility.
Now the family has to make a lot of decisions very quickly, without knowing all the options out there. Bob says hospital social workers and discharge planners would love to spend hours explaining home care, independent living, assisted living and nursing home care. They simply don’t have the time with the paperwork and state requirements.
When it’s rushed, the tendency is to say, “We’ll just take mom home.” Okay. A daughter flies in from another state for a few days. That helps. But what about a week from now? Six months from now? That’s the planning his team helps with.
The second example was a rehab that was licensed as a nursing home. In Michigan, Bob says, a licensed nursing home that accepts Medicare also has to accept Medicaid, which pays a little less. When a resident switched to Medicaid, the facility tried to push her out. Bob’s team got the corporate office involved, and eventually the facility’s own lawyers, who agreed: you can’t kick someone out because they switched payment source.
When the Hospital and the Nursing Home Don’t Talk to Each Other
This one hit home for me.
When my dad was transferred to a skilled nursing facility, it was almost two weeks before any therapist even set eyes on him. And those days were counting against the days he had there. He was there to get therapy. They told me they didn’t have any orders for therapy. The hospital told me they sent them.
All of a sudden I had another part-time job, just trying to get two facilities to talk to each other. I wrote about why so much of this lands on the caregiver in why dementia caregiving is so hard.
Bob says this happens all the time. Orders get mixed up in every transfer, from home to the hospital to a nursing home.
Medications are a big one. Someone might get a medicine in the hospital to calm them down for three days. No doctor ever decided they should take it for the rest of their life. But nobody thought to stop it. Then the nursing home doctor adds new prescriptions, some meant to be temporary. Suddenly there are all these drugs, because no one is stepping back to look at the big picture.
He’s not blaming the doctors or the facilities. That’s the nature of communication between them. The family can be that person who looks at everything. But a lot of times, Bob says, families don’t know what questions they’re allowed to ask, or what they’re allowed to make polite demands for.
I also told Bob I was worried, the whole time I was advocating, that it would somehow be taken out on my dad. I was respectful and polite. But I was persistent, and I felt like I was becoming the problem person. That they’d see me walk in and think, “Oh no.”
Bob has seen that too. The last thing anyone in health care wants to hear is, “There’s a lawyer on the phone for you.” Even though he doesn’t sue people, there’s that nervousness. That’s part of why he hires social workers with a gentler, more diplomatic style to do the advocating. Their goal is to be cooperative and helpful. The facility wants to provide the therapy too. Everyone just needs the system working properly.
How to Find an Elder Law Attorney Who Does This Outside Michigan
Bob can only take clients in Michigan. Outside Michigan, he pointed to two groups.
- The Life Care Planning Law Firms Association. When he last looked, about 100 law firms belonged to it. A firm in this association almost certainly has some form of care planning or care navigation, or is working toward it.
- Dementia Focused Practice, run by Pennsylvania elder law attorney Julieanne Steinbacher. She worked in nursing homes and studied gerontology before law school, and now helps other lawyers build this kind of practice.
Some lawyers belong to both, some to one or the other.
Can You Put a Camera in Your Loved One’s Room?
This is one of the most common questions I get. We’ve all seen horror stories on the news, and we know they’re the minority of cases. But a camera can bring a sense of calm, whether it’s in a care facility or at home with professional caregivers coming in.
Bob gave me the lawyer’s answer, which he admits might differ from what he’d do for his own parents. The lawyer’s answer is: check your state law.
The big question is whether your state is a one-party consent state or a two-party consent state. In other words, does everyone who might be captured on the recording have to consent to it?
Michigan is a one-party consent state. At home it’s a little different, but you still want to check, because if the caregivers don’t know there’s a camera, that could be an issue.
There’s a separate question: if you did have footage of something bad happening, could it be used in court? Bob can’t guarantee it would be. But he says those are two different issues. Most states are more open to evidence of wrongdoing in court than they are strict about whether every recording requirement was met.
To find out your state’s rule, search something very specific, like “Is Michigan a one-party consent state for recording devices?” A specific legal question is a pretty good search, Bob says. A general one isn’t, because every state is different, even with federal benefits like Medicaid and Medicare. You might find information that’s accurate where the person who posted it lives, but not where you live. For state-by-state details, he likes the Elder Law Answers website.
What if the facility finds the camera? Bob says in Michigan he’s confident they could not discharge your loved one for it, and he could probably stop that discharge. That’s how he thinks the law should work everywhere, but enforcement varies by state.
Can a Facility Discharge Your Loved One Against Your Wishes?
So many Careblazers tell me, “They’re trying to kick my mom out,” and they feel powerless.
Bob’s first question is whether the facility accepts Medicare or Medicaid. Either one. If it does, then in any state in the U.S. it has to go through a federal process called involuntary discharge, and you can appeal. Bob appeals these regularly, and in Michigan he has never lost one.
If the facility doesn’t accept Medicare or Medicaid, it may not have to. In Michigan, many assisted living, memory care and independent living communities aren’t licensed at all, or are licensed as adult foster care. The state treats those more like a landlord and tenant agreement, and your loved one can be asked to leave with proper notice.
Can you ask the facility to show you the criteria it has to meet to discharge your loved one? You can ask, Bob says, but he doubts they’ll readily provide it.
Often the administrator doesn’t know all the rules either. They’re so used to saying, “Your Medicare days are up, so you’re leaving tomorrow,” and families not knowing they have rights, that they assume that’s the law. Bob isn’t being critical. It’s just what they’re used to.
That’s where your long-term care ombudsman comes in. Bob calls the ombudsman your best friend in that situation, because they will know the law.
How to Reach Your Long-Term Care Ombudsman
The ombudsman is an advocate for residents. In Michigan, the local ombudsmen work through the Area Agencies on Aging, and every area of the United States is covered by an Area Agency on Aging.
In both facilities my parents were in, the ombudsman’s contact information was posted. Look for it. If you don’t see it, ask for it.
Bob also suggests a specific search, like “Who is the long-term care ombudsman in Oregon?” You can read more about the Long-Term Care Ombudsman Program on the federal Administration for Community Living site.
How to Advocate in a Nursing Home: Ask for a Care Plan Meeting
When I asked Bob where a family member even starts, his first tip was: be nice.
I know that’s hard. It’s a crisis and emotions are high. But you’re trying to work together, so stay cooperative and non-adversarial.
His second point: what you can do depends on whether the place is regulated. In some states everything is. In his, a hospital or a licensed nursing home gives you lots of rights. Assisted living and independent living give you fewer, and often your only option is to leave and go elsewhere.
In regulated places, the formal tool is the care meeting. Hospitals and regulated facilities are required to hold them, certainly before a discharge, but you can call for one at any time. Federal nursing home rules give residents the right to request care planning meetings and to name who is included.
Bob is a strong believer that the formal care meeting is the best place to fix a problem. If you tell the nurse manager or whoever comes into the room, it may never get written down.
- Get the right people there. Someone from nursing, therapy, the business office, and a social worker. If they aren’t there, you can say, “We can talk today, but this is not a complete care meeting.”
- Ask for a written plan of care. This doesn’t happen all the time, but you can demand it. If the call button goes unanswered for a long time, or mom is always dehydrated because there’s not enough water, ask for the fix in writing. Each person should have a unique, customized plan of care.
- Ask for a log in the room. To enforce the plan, Bob’s team sometimes puts a log in the room. Every time staff comes in to help with toileting or a shower, it gets logged, and the family can see it.
It’s hard to ask for these things without sounding angry or demanding, Bob says. But they’re the most effective. Ask for a plan of care, ask for it in writing, and enforce it with a log.
Careblazers, I hope you caught that.
Who has to be told about the meeting?
Federal rules, and likely most states, say who must be notified. The facility can’t force the family to come, but it should give proper notice and offer other options if you can’t make that time.
Bob has seen a “care plan meeting” that was just the social worker, the nurse manager and the business office sitting together and writing it down. That is absolutely not sufficient. Your loved one has a right to be there. The family has a right to be there. The facility may name one primary person to notify, but it can’t deny you anybody you want there, including an advocate from a law firm.
What if nobody tells you?
When I worked in a long-term care facility, we held care plan meetings weekly. We invited the resident, their family member and anyone else they wanted, and we sat together for about an hour. We followed that to a tee.
As a family member, I’ve never once had it happen that way. Even when my dad was discharged to a group home, there was no discharge meeting.
The good news, Bob says, is that you can demand a care meeting. If they say they had one yesterday, you can say, “I didn’t know about it. I wasn’t there.” If a meeting happens without the right people or the right information, ask for another one. And if they refuse, call the ombudsman.
There’s another formal channel inside nursing homes that most families have never heard of, which I covered in this little-known nursing home law.
How to Push Back on a Rushed Hospital Discharge
In a hospital, the care meeting is a discharge meeting. And Bob’s tip is about timing.
Hospitals tend to discharge on Friday afternoons, and that’s the worst time. Your advocates aren’t available at six on a Friday. And if your loved one does transfer to the right place, there’s no physical or occupational therapy on the weekend. Yet those days still count against you. That’s exactly what upset me with my dad.
Here’s what Bob does, and so far it has worked every time:
- Ask for a formal discharge meeting. Under Medicare rules, Bob says, you can ask for one, in person or virtual, and they’re supposed to give you a detailed discharge plan. It almost never happens unless you ask.
- Ask them to continue the stay, at least until Monday, so you have time to figure out your options.
- If that doesn’t work, appeal the discharge through your Quality Improvement Organization. Every region has one, and the hospital has to give you the phone number. The appeal is just a phone call, made before your loved one is discharged. Sometimes it goes to voicemail.
The Quality Improvement Organization is a third party that looks at whether the discharge is proper. In Bob’s experience, if the hospital is trying to discharge on a Friday or a weekend, it can’t document its response until Monday. If nothing else, you’ve bought time to get others involved.
When to Call an Elder Law Attorney
It depends on the attorney, Bob says. Many elder law attorneys focus on the legal and financial work and won’t know the ins and outs of Medicare rules or the Quality Improvement Organization.
His own clients, even perfectly healthy younger ones, sign an agreement whose last paragraph says: call us. Call if anything bad happens. And call while you’re still in the hospital, after the fall or the stroke, because that’s the best place to start the plan of care.
If you get too far along, you may have already lost some of your rights. While you’re in the hospital, you have the right to decide where you go next. If they say, “This place has a bed, we’re sending you there,” and it isn’t convenient or you’ve heard bad things about it, you can say no and ask them to find a different place. They’re not supposed to discharge you until they’ve found an appropriate next step.
What stands out to me is how proactive that is. Most people call a lawyer after the neglect or the abuse has already happened. Bob is saying, call when the hospitalization happens, so someone is making sure you have the right information from the start.
How to Tell If a Care Facility Is Regulated
This is different from state to state. Most people think of every care setting as “a nursing home,” Bob says, but independent living is very different from assisted living, and in Michigan assisted living is very different from skilled nursing. The level of care tells you what your rights are, what services to expect and what government programs might be available.
You can ask the facility, but the answers can be confusing. A better source is your state’s licensing website. In Michigan it shows whether a place is licensed, what the license covers, and for skilled nursing, how many beds take Medicare and Medicaid and how many are private pay only. You can also see inspection reports and any negative action against the facility.
To find it, Bob searches something like “Michigan Bureau of Licensing,” since the name changes with every new governor. Make sure it’s the state website, not a private one. Then choose the license type, such as nursing home.
The national site is Medicare.gov, which rates facilities that accept Medicare. Bob doesn’t rely on it. Some places he thinks are the best don’t have five stars, and some places he would never send his mom do. The ratings are about how well a facility complies, how well it teaches to the test.
Should Regulation Decide Where Your Loved One Lives?
It should be a consideration, Bob says, but sometimes it’s not the answer. Start with what your loved one needs and the quality of life they can have in each setting.
In a regulated facility in Michigan, your loved one will usually have a fairly small room. In assisted or independent living, they might have an apartment with a kitchenette, where they can close the door and watch their own TV. If they need 24-hour care and supervision, Bob would lean toward the more regulated, licensed facilities. If quality of life and some independence matter more right now, he doesn’t mind an unlicensed one.
The trade-off is that an unregulated place can ask your loved one to leave with proper notice. When that happens, Bob sometimes just calls and asks whether they can make some accommodations. If the behaviors have a trigger, a few tweaks like their favorite movies or snacks might stop it. And don’t they want to keep a resident who’s paying every month?
Resources From This Interview
- Mannor Law Group, Bob’s firm in Michigan. His podcast, Advice From Your Advocates, is a free way to learn about your rights as a family member even if you’re not in Michigan.
- Life Care Planning Law Firms Association
- Dementia Focused Practice
- Elder Law Answers
- Medicare.gov
- Quality Improvement Organizations
- Find your local Area Agency on Aging
- About the Long-Term Care Ombudsman Program
Advocating for your loved one can feel like a second job, and it’s lonely to be the only one asking the hard questions. Inside the Care Collective, we talk through these situations together every week: the care meeting you’re dreading, the discharge that feels too fast, and how to keep going while you’re doing all of it. You can learn more here.
