Rebecca Priest

When did needing help mean no longer having independence?

As we age, we may reach a time when our bodies, our minds, or both decrease in their capacity to allow us to care for ourselves. This is a basic premise for the existence of nursing homes — to care for those who no longer can care for themselves.

However, the traditional nursing home is a medical institution built to care for a person’s medical needs so they can remain alive. While that notion sounds noble, it lacks one important element of being alive — and that is living. The goal is medical, not personal. It is care for condition of the body, and not for the spirit. And, it often reaches its goal at the expense of a person’s own choice.

St. John’s Home in Rochester, NY, does not prescribe to that idea.

We do not believe that hospital life is the right life for people who need long-term care. We believe people deserve long-term care that gives them the same autonomy their own home would afford them, with the same dignity.

St. John’s Home, a 455-bed skilled-nursing facility, is embracing a philosophy that allows its residents to retain that independence through its Small Homes Project. Floor by floor of the six-story building is being renovated to create these Small Homes. Fewer residents, more private rooms, a communal kitchen, and dining area make up the major physical changes that are easiest to see. Each will operate with innovative staffing and care practices, ultimately creating a culture that recognizes each resident’s desires, passions, and preferences as equal to his or her medical needs.

One reason people have a hard time addressing their needs for long-term care is the anxiety of giving up one’s home and the independence that lives there with them. It is comfortable both physically and emotionally, and ideally a person would never need the kind of care that would require them to leave their home behind. The truth of the matter is that it is just not the case.

It is not for lack of desire, but because there are some crucial issues not being addressed from a national narrative. One — a lack of geriatricians. There are few incentives for going into geriatrics. In fact, I think there is disincentive because the pay is the most challenged, the exposure is the most difficult, the hours are unrelenting, and the call is inexorable. So, those brilliant-minded physicians who could go into geriatrics instead go into plastic surgery, podiatry, dermatology, anesthesiology — anywhere where you can get paid more and have a bit more of a stable life.

Another issue is the federal government’s focus on credentialing. Again, while this has a noble goal of creating a highly trained workforce, the actual effect is a smaller labor pool trying to keep pace with an aging population that is growing exponentially every year. Then, those who have credentials are put in a position to do everything they can to make sure they keep them, valuing procedure and protocol over compassion and choice.

Once you enter into a care system, whether at home or not, you are trapped by that system because of the risk of litigation. I think anyone who has experienced growing old through a loved one or a family member will tell you that this is exactly what happens. You start to need support, you engage support, and people all of a sudden start micromanaging every aspect of your life. No longer can you make ‘bad decisions.’ No longer can you choose to do something that may not be safe, because then you risk losing your care provider.

Unfortunately, the problem is that there is no other option. You get hospital-level care in the medical model or you get … nothing. There is no other option.  I think that is the culture change for which I am looking. It is a different lens that can continue to show some really convincing arguments and outcomes.

The dream for Small Homes is to create an environment that is safer than home but just as comfortable. From choosing what time you want to wake up and go to bed, to when and what to eat, Small Homes are built to accommodate — even if what a person wants to do is not recommended. For example, if a person is a smoker with no intention or desire to quit, the new philosophy is to find a way to help that person maintain his or her lifestyle. Because smoking is not allowed on campus, plans would be made for that resident to be taken off campus to do so. All can agree it is not medically ideal to smoke, but we believe that residents have the right to choose.

Small Homes provide the same level of skilled-nursing care wrapped in a different culture that does not believe that medical care is the only kind. The concept is modeled after The Green House Project pioneered by Bill Thomas, M.D., since 2001 and backed by the principles of the Eden Alternative, which promotes the idea that people can grow at any age. Green House Homes house up to 12 elders and utilize staff members who cook, clean, and provide medical care, instead of the traditional nurse, LPN and CNA roles. In 2012, we at St. John’s became the first in the country to build Green House Homes within an existing residential neighborhood in nearby Penfield, NY. The tremendous quantitative and qualitative results have propelled us to implement those principles at our primary facility.

Renovations to St. John’s Home began in 2015, and already the physical transformation is apparent. Starting with the sixth floor, the private rooms and bathrooms stand out. Even stepping off the elevator has changed, having the look of an apartment building rather than a nursing home. Hardwood-style floors replace tired linoleum, and a family-style kitchen sits in the middle of it all. It is a space that belongs to the residents.

The communal kitchen is where this concept truly manifests into reality. So much of the American lifestyle is centered on the kitchen and eating meals. It is a piece of home that is among the most difficult to relinquish. In this setting within the Small Homes, residents help prepare meals as often as they would like. And if they no longer have the physical ability to help, they are often sought for insight and instruction on how best to make the meal. Cooking has always been a path to independence. When you get older, it is a path to share traditions.

Also carried over from the The Green House concept is a novel approach to staffing that helps complete the cultural shift from medical model to resident-centered care. Instead of staff members that are limited by their job descriptions, we will utilize a “universal worker” concept, whereby staff will cook, clean, do laundry, and spend time with elders in a very personal way. The goal is also to keep the same staff members in the same Small Home, creating greater continuity for all involved. The result is a team of people that builds real relationships with those they serve, simultaneously becoming an integral part of their lives while fostering trust.

“Home” will fail all of us at some point. Truly, we have built a society that is too independent. So, anytime interdependence needs arise, we fail to be able to support them. I think that Small Homes are a way to shift the way we age in community, the way we live in community. You may make choices that are not necessarily the most advisable. However, you are supported to live your life the way you want to live it and we have the organizational structure that is committed to supporting that. Small Homes are the homes that you can stay in and do what you want without the threat of losing support from a provider.

This is just the beginning for Small Homes at St. John’s Home and we will continue to grow until the entire organization absorbs and reflects a changed perspective on long-term care. Within three years, I envision each of the Small Homes shopping for groceries at an actual store that exists right where my current office sits, with other amenities common to a neighborhood being built onsite just the same. While the physical transformation is far from over, the focus will remain on helping people live rather than just helping them stay alive.

Rebecca Priest is the Administrator of Skilled Services at St. John’s Home in Rochester, NY. You can contact her at [email protected]. For more information about the Small Homes Project, go to