What Families Want from Nursing Home Reform Post-COVID: No More Lockdowns and a Seat at the Table

The federal government last week ended a year-long nightmare for families across the country when it announced the relaxation of visitation bans at nursing homes in all but a few limited cases.

But for the family members who spent 2020 working to reunite with their loved ones, the work won’t end along with the expiration of strict lockdowns.

To learn more about what family members of nursing home residents want from the reform efforts percolating in states and Washington, SNN invited Mikko Cook and Carrie Leljedal to join our “Rethink” podcast.


Cook is a co-founder of the Essential Caregivers Coalition, and Leljedal leads Illinois Caregivers for Compromise.

Each has a unique perspective on the lockdown: Cook’s father has late-stage Alzheimer’s and resides at a skilled nursing facility in Albany, N.Y., while Leljedal became active in the movement while trying to arrange visits with her 33-year-old son, who has a developmental disability and seizure disorder. He lives in a combination intermediate care facility (ICF) and SNF in southern Illinois.

Their experiences were different, but both have concrete and insightful ideas about how families can better be incorporated into decision-making — both at the facility and policy level — when the next crisis strikes long-term care.


Excerpts from the conversation, recorded prior to the formal end of the lockdown, are presented below; listen to the full episode at Apple Podcasts,
Google Play, and Soundcloud as soon as it’s available.

Tell me about your experiences with trying to change lockdown rules.

Cook: As the lockdown happened, my family was scrambling to figure out what actually was happening and how to get more information and access to my dad. Unfortunately, what ended up happening was even though my mom was talking to the facility every day, we had no contact with my dad for over 100 days. Despite pleas to the facility, to the ombudsman, to the Department of Health, to the governor, to our state officials, nobody responded to us.

Initially, it was about a place where people could come and talk about what was happening. But we fundamentally understood that we were all scrambling to learn not just the situation, but the entire breakdown of what the system was and who controlled what — and what did things like the 1135 waiver mean, and who did you contact when you needed help?

We became a national advocacy group to help people learn about: What is the system? How does the system work? Where is your loved one in the system? And how can we all come together to change that system? Especially how we can create a federal designation for an essential caregiver that is put into place so that when the next public emergency happens, and it will, we will never be 100% locked out again.

Leljedal: Our building is one half the ICF; the other half of our building is actually skilled nursing. Ours is one of the few — we’re not corporate-owned, we are privately run. It is a very personal, almost family-type business. But we all faced the same issue. I wasn’t allowed to see my son; I wasn’t able to get in and figure out what was going on. He had to have all his doctor’s appointments cancelled because they weren’t allowed to go into the building. I was 128 days without physically seeing my son without glass between us. And then for the first month, I was only allowed to see him at doctor’s appointments, socially distanced.

We shouldn’t be separated from our families, and children, even if they are adults, should never be separated from their family. I have been, since almost day one, publicly going anywhere and everywhere I could to get somebody to listen, try to get help. Like Mikko, I did the governor’s office. I did state representatives. I’ve been to the media. I talked to our local newspaper here in southern Illinois to do one of the first stories they did about long-term care and the virus because nobody realized what isolation meant, and that no visitors means just that: no visitors.

But we’re not visitors. We are way more than that. We are an essential part of that care team who provides care to our loved ones every day of the week. They’re lost without us.

What are you specifically asking for in terms of a federal designation for an essential caregiver? What would that look like, and what sort of protections and rights are you looking to hopefully have codified?

Cook: When it comes to an essential caregiver, I think the key point to note is what Carrie has already said: We’re not talking visitors. We are talking people who are a massive part of the emotional, social wellbeing — and sometimes physical wellbeing — of residents. The idea is that an essential caregiver is someone within maybe the family circle, or even outside of the family circle, maybe a friend — who is designated.

It would be actually optimal if it was two people — because putting all of this responsibility on one person is a lot — that the resident could designate as their go-to support person. This person would be trained, and tested, and PPE’d up exactly as staff, so that they would not pose any more threat than staff would.

Essentially, when you think about it — Carrie as a mom, or me as a daughter — we are already doing everything we can to protect our loved ones from the virus. So for us to be trained and tested, we really aren’t going to pose any more of a threat, in that we will do everything we can to see our loved ones.

In addition to that, the idea is that you — regardless of the infection rate, regardless of the outbreak situation in a facility — if you are trained and tested and equipped as staff, then you should have the access like staff.

You would be limited to just focusing on the person you’re with, obviously — this isn’t about walking into a facility and wandering around. We want to make sure that everyone is safe. But we don’t want to jeopardize the wellbeing of our loved ones with this blanket approach to just creating safety by locking the doors.

On top of the essential caregiver designation, what other changes would you like to see?

Cook: I would say the number-one change that I would like to see, across long-term care, is giving families a seat at the table when it comes to defining policy moving forward.

Families, who are the voice of the person receiving the care, have kind of been left on the sidelines, and I don’t think that you can really address all the needs and all of the issues of an individual person with a form like my mom had to fill out for my dad that was like: “Tell us about his hobbies.”

This isn’t enough. I mean, this is 70-plus years of a man’s life, and the majority of them lived with these people. So who better to incorporate into the conversation than the families as it relates to their care and wellbeing going forward? I would absolutely say that’s the number-one thing that has to happen.

At a larger scope, conversations around staffing and finances, and all of these [topics] are starting to bubble to the surface, which is fantastic. I definitely think there needs to be transparency into the finances of what is going on in a lot of these institutions. I know that there’s the conversation of: “Well, we can’t just have more staff because we can’t afford it.” And I know that a lot of the facilities are looking at bankruptcy as a result of the coronavirus. But really, it’s the same age-old issue for anything, which is you’ve got to follow the money.

Where is that money going? And why is it such an issue to pay people who are dedicating their career to taking care of other people — and paying them less than what somebody at Burger King would make? We have some big issues to tackle, and for that I am really grateful that coronavirus happened.

I agree that extra transparency would probably bring trickle-down benefits to a lot of other long-standing issues — the debate usually boils down to the industry saying it needs more money, advocates saying that it doesn’t, and then nothing really changing because it’s hard to say definitively where all the money is flowing.

Leljedal: In Illinois, you can’t even build here unless you get approval from the state. There’s so many regulations in Illinois, and they tied people’s hands if they wanted to build a new building and make things better. We need some strong federal guidance to help the states try to get in alignment, because there’s no alignment — county to county, city to city, even state to state. There’s no alignment anywhere right now. That adds to the disruption, and the lack of cohesiveness of care.

Cook: I think another good place to start is to look and see what is working. I was just recently told of a facility, I think it’s in Maryland, where they have had zero cases of COVID. Zero. The reason has to do with how much they were putting behind infection training prior to all of this ever happening, so they were ready.

Taking the models that are working, and starting to build from there — you’ve got to start from a positive point, and not just jump into the hole of the negatives. I think that would be very helpful.

Carrie, you seem to have had good experiences with the facility where your son lives. Why is that?

Leljedal: Well, first of all, we don’t have the turnover that the majority of facilities in the country have. We have an executive director and director of nursing that have both been there for more than 20 years. The number of staff we have in our building [who have worked there] 10 or more years is very impressive. Our owner is hands-on; his office is right there on the property. He knows the residents by name on both sides of the building. He gears what they do towards our residents.

Are they perfect? No. Do they make mistakes? Yes. But the thing I’ve known this whole year was: I never worried about my son being neglected. I never worried about my son being abused. I never worried about him not getting the care he needs. Was it always done the way I would have liked it? No. But it was done, and he was well cared for, and so is every other resident in that facility.

Prior to COVID, the doors were open 24/7. There was never: “Oh, you can’t come visit; it’s two in the morning.” If we wanted to go in at two in the morning, we were allowed. Families were part of it. When you can call and get the director of nursing on the phone, or get the owner of the facility to return an e-mail or phone call consistently, that makes a huge difference. The stories that I hear from people [where] it’s taken a month to get a live person to speak to, it’s unacceptable.

Mikko talked about patient-centered care. Really what this means is family-centered care. If you take the model that’s used in pediatrics and move it to long-term care, how they look at family-centered care, that would make everyone’s life better — because then you have input from everybody that’s part of that team, from the family to the resident to the medical professionals. They’re all on one level playing field.

I had a feeling that would be your answer. If the staff is stable and attentive and available, even the oldest, most outdated facility can provide care that makes everyone happy and safe.

Leljedal: Very much so. We have staff on my son’s side of the building … that have been there 15 and 20 years. They will tell you they’re there because this is their home. This is their residents’ home. On our side of the building, the residents aren’t there for one, two, or three years. They’re there for 10, 20, 30 years, through their entire adult life. Especially in those kinds of settings, you need consistency. Everywhere needs it.

Cook: The staff needs to feel supported, and this is true of any job. How can you give your heart to something that feels like it is not giving anything to you?

I’ve spoken to staff where they love the residents as their own family, so this entire year of lockdown is breaking them just as much. I just recently read a post from a woman who works in activities programming for a facility, and she said she locks herself in the bathroom sometimes and just cries because of how hard this is to see these people go through this.

Among higher-level financial and management folks, there’s this idea that to retain frontline staff, they have to be given pathways for advancement and promotion. I’m sure that’s true for some number of CNAs. But actually speaking with caregivers and their leaders has taught me that for a large number of people in the field, they’re doing exactly what they want to do — they have a very personal and sometimes even spiritual calling to be caregivers. They don’t necessarily want to run a building one day or be a regional supervisor; they just want to be paid well and kept safe while they work in the career they chose.

Cook: Absolutely. I mean, you think about the tasks that a CNA has to go through on a daily basis, with how many residents, right? Now you also are asking them to come to this work in the middle of a global pandemic, where they at any moment could be exposed to the virus. There are so many who are just throwing themselves into the work because they love it. That is a calling. That’s not a job, and we need to respect and reward that level of dedication and support them in that.

What do you want people in the industry to know about your experience over the last year?

Leljedal: The hardest part of the last year has been knowing how many people are just isolated by themselves, that their families don’t even know how to attempt to get in, or attempt to be able to make the next step, because providers are not sharing that information. We need transparency — just information. We need clear-cut, concise information on a regular basis, which doesn’t happen.

To move forward, besides private rooms and private bathrooms, we need to get to smaller buildings along the lines of the Green House Project, or something that is more individually based — so also the staff then becomes more personally tied, because they’re not taking care of 50 residents. There’s 10 or 12 in a house. We’re going to see more consistency of care, which is going to bring more quality of care. And in the end, that’s what we need for our loved ones: quality of care.

Cook: I would say, to speak to your audience within the industry: Make the family members your partners in this experience. This isn’t a you-versus-them kind of situation. I’ve tried to help the people within the Essential Caregivers Coalition, when they come and look for answers, and say: Reach out and see the humanity on both sides. I think more can be accomplished by bringing the families to the table in terms of trying to make a solution that works for everyone, as opposed to just cutting out any one person in the conversation.

That includes everything from reform to public health policy. I think a lot of this could have been avoided. Of course, the lockdown had to happen. But there needed to be a revisitation of what the policy was, and talking to all the people affected and saying: “Okay, here’s where we are, and maybe we’ve made some mistakes, but let’s work together to make this better.”

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