The Institutional Bias

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Leah Smith

The smell is always the first thing you notice. It’s a mixture of urine masked with bleach. But urine can’t be masked. So it’s more of a urine flavored bleach that you smell. Once you’ve smelled it, you will never forget it.

It’s the smell of a nursing home.

After the smell you usually notice the bored-out-of –their- mind humans lining the hallways. They’re looking and hoping for someone to come see them, to give them a little attention, but, more importantly, to give them something to do. They’ve usually been sitting there for years. I’ve heard the story a million times and it usually goes something like this: “I was living at home when X happened (x being any type of accident or fall that left a person with a disability.) I was taken to the hospital and told I needed long-term care and that I couldn’t go back home yet. They transferred me to this nursing home and said that it was only temporary. Once I healed, they told me, I would be fine and could go back home. That was five years ago. While in the nursing home, my income was directed here and I was no longer able to pay my rent. My house and everything in it are long gone. The last time I saw it was when I left in the ambulance that morning. Now I have nowhere to go, but here.”

In full disclosure, I used to work in a Center for Independent Living as a Relocation Specialist, which meant that I spent 40+ hours/week trying to get people out of nursing homes and back into the community. Needless to say, I’ve seen a lot and am extremely biased that no one should have to live in a nursing home.

After hearing their story, my next questions was always, “What kind of therapy are you receiving now?” The answer was always, “None.” No Physical Therapy, no Occupational Therapy, no Psycho Therapy. Nothing. Zip. Zero. They were just there, because, in our society, we have no idea what to do with someone that has a newly acquired disability, or a life-long one for that matter. In the United States, nursing homes have the advantage of what’s called the Institutional Bias, meaning that any state that receives federal dollars for Medicaid, must provide nursing home services, but community based services are optional. Thus, as long as this institutional bias exists, we will have human beings- real people that are our mothers, grandmothers, grandfathers, cousins, brothers and sisters- locked in a nursing home with nowhere to go, but there.

“But if they aren’t receiving any type of therapy, why can’t they leave,” you ask?

Often times it’s as simple as they might need some help taking a shower or other task of daily living. That’s where community based services come in. If they were to live in the community, among their peers and family members, they could have a personal attendant come in once, twice or three times a day (depending on their needs) to assist. The attendant comes in, helps with the task at hand, leaves and the person goes about their day, just like everyone else. Logically, and on paper, this makes so much more sense. In this scenario, we allow people to be people, moving about freely to live their lives in the way they choose to do so. It’s also cheaper than funding a person to live in a nursing home.

Let me repeat that. On average, it costs 33% less for a person to live in the community and have services in the community than it does for that person to live in a nursing home.

In the latter, we allow people to be in charge of their services. They are the boss and can hire the person(s) that can best suit their specific needs or fire the person that isn’t able to help them the way they need it. This became very clear to me on one of my first visits to a nursing home, when I walked in to find a man completely naked, shaking in the hallway in his wheelchair. He was crying. I asked him where his clothes were and he responded by explaining that someone had taken them. As anyone would do, I began asking lots of questions as to why he wasn’t clothed and who was helping him. Not one person stopped what they were doing to help. Not one person tried to assist. Every single person in that crowded hallway kept moving; ignoring the fact that this man was completely naked and shivering, as though this was something we should all just get used to. This man deserved the right to fire whoever was responsible for leaving him this way, but I promise you no one was fired that day.

It was in this moment that I realized that nursing homes are not the answer and that we can do better. We have to stop throwing away people.

Leah Smith is a writer, communications professional and disability advocate. Leah holds a Bachelor’s in Public Relations and a Masters in Public Administration and Policy. She has focused her career on creating access and equality for all. Leah currently resides in Philadelphia with her partner and two dogs.