The Hospital Is Not Always the Safest Place for Your Loved One

If your son or daughter cannot speak for themselves, you already know the feeling I am about to describe.

You are in an emergency room at two in the morning. The staff are kind and they are trying. But they are looking at a chart, and the chart does not say that he always breathes like that when he is uncomfortable, or that the sound she is making is the one that means she is cold and not the one that means she is in pain. You are the translator. And if you are not in the room, there is no translator.

Most families we meet have lived some version of that night. It is usually why they called us.

What actually goes wrong

When a medically complex, non-verbal adult goes to an emergency room alone, two things tend to happen.

The first is that nobody can tell their story. Every piece of history that would normally guide a clinician has to be guessed at. A sound that means one thing at home gets read as something else entirely. Treatment decisions get made fast, with the most cautious interpretation available, because the team in front of them has no baseline to compare against.

The second is equipment. Feeding tubes, airway equipment, the specific hardware our residents live with every day are things a general emergency department handles occasionally rather than constantly. For one of our residents, there was a stretch when every single trip to the emergency room ended the same way: his feeding tube stopped working, and it took a procedure and several days in the hospital to put right. Every time. He went in for something unrelated and came home having been through something that never needed to happen.

So when we say we work hard to keep our residents out of the hospital, we are not making a marketing claim about how good we are. We are telling you that for this particular group of people, the trip itself carries real risk, and that risk has to be weighed against whatever we are going there to fix.

What we do instead

The first thing is that we notice early. This is the whole reason we keep our homes at six residents and staff every shift with one nurse and one caregiver, around the clock. Our team sees the same six people every shift. They know what a good day looks like for each of them. When one of our residents is not quite himself, somebody catches it that day, not three days later when it has become something.

From there, our nurses have real room to work. Our primary care doctor makes house calls. Our nurses carry standing as-needed orders for the things that come up, and they can get new orders quickly when something does not fit the pattern. Our nurse shift leader starts treating at the bedside and notifies our clinical and residential managers at the same moment, not after. One of them comes.

I will give you one example, with the details blurred for privacy.

A while back, one of our residents was in a hospital and we got a call in the middle of the night. The team there believed he was failing and told us so in those words. Our residential manager was in the car immediately. She got there, went to the bedside, did the small specific things she does for him at home every week, and he came back around. The clinical team standing in that room had been looking at a man they could not read. She was looking at someone she knows.

We also keep our own wheelchair accessible vehicles. When a trip is genuinely necessary, we drive, which means someone who knows your loved one is in the room the entire time instead of handing them off to strangers at the curb.

To be clear about what we are not saying

We go to the emergency room when it is needed. There are situations where that is exactly the right call and we make it without hesitating.

Reading this because you are trying to work something out for someone you love? You can tell us about them at the bottom of this page. A real person reads every inquiry.

What we do not have is frequent flyers. Not because our residents never get sick, but because we catch things at the start, we treat what we can treat where they live, and we do not use the hospital as a substitute for paying attention. That is the difference, and it is a difference you can ask any provider to account for.

If you are weighing a placement

Ask whoever you are touring: how many residents per staff member, overnight? Who do your nurses call at three in the morning, and how fast does that person show up? What happens when a resident needs to go to the hospital, and who goes with them?

You do not need our answers to those questions. You need somebody's, in writing, before you decide.

For APD support coordinators and case managers: we are happy to walk through our hospitalization history, our standing orders arrangement and our nurse escalation pathway on a call. Both homes operate under the APD iBudget Waiver.

If you would like to talk about your loved one, we would rather have a real conversation than a sales call. Reach us at aggcares.com.

About Audubon Gardens Group

Audubon Gardens Group operates two licensed 24-hour nursing residential care homes in Orlando, Florida: The Garden at Bennett and The Garden at Ibis. We serve medically acute and complex adults with intellectual and developmental disabilities under Florida's APD iBudget Waiver and Florida Community Care (ICMC) programs.

Joshua Wilson is a co-owner of Audubon Gardens Group and writes on residential care, APD services, and the practical realities of navigating Florida's IDD service system.

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