Empowering Elders: How Residents Fought for and Won Person-Directed Care

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Lori Gonzalez

Lori Gonzalez, Ph.D.
Research Faulty, Claude Pepper Center
Florida State University

Elder empowerment challenges ageism and the medical model of care that persists, despite culture change efforts, in Long-Term Care (LTC). Empowerment is essential to person-directed care, or “…care that honors and respects the voice of individuals and those working closest with them” and efforts to “…individualize and de-institutionalize the care environment” (Pioneer Network, 2018). To achieve person-directed care, Elders direct every aspect of daily life including health care that is organized around Elders’ preferences—not that of the organization.

Only 5 percent of nursing homes report that they fully practice person-directed care (Fagan in Ronch and Weiner, 2013; a similar statistic is unavailable for other LTC settings, however, change agents recognize that person-directed care should be practiced in the entire continuum of care). How do we move from the institutional, medical model of LTC to person-directed care where Elders make the decisions about the community in which they live and about their day-to-day lives?  The key to culture change lies in the empowerment of Elders. The following is one story of how Elders were empowered to make a significant change in their residential care community.

In the early 2000s, a residential care community in South Florida needed to figure out what to do about their campus’ aging, hospital-like skilled nursing facility (SNF; a type of LTC setting formally licensed by the state).  Residents were very much concerned about the state of the SNF and brought together the Resident Senate Active Health Center Committee to discuss what should be done.  Many of the committee members had either volunteered at the SNF, received services, or knew someone who had.  They developed a survey of residents and a list of 20 reasons why the facility had to be replaced, not just updated, to present to the Board of Directors. These reasons included inadequate activity spaces, inadequate living and storage space, semi-private bedrooms, and shared bathrooms–many without showers.

Exactly what would the new SNF look like? Architects visited the site and drew up several plans–all of which were deemed to be too expensive by the board. Next, a large residential community planning organization visited and recommended that just one wing of the existing structure be renovated. Elders actively opposed this option, and again, presented to the board justifications for new construction.

Board members continued to argue that the community could not afford to provide private bedrooms and bathrooms. After all, they argued, the community contracts stipulated that residents were entitled to semi-private rooms, not private rooms. This did not sit well with one resident board member who reviewed the contract, found no such stipulation, and brought it to the attention of the other members.

Months went by and Elders became concerned that no progress was being made. An informal caucus of concerned residents was formed to ensure that things were moving along.  Several Elders made trips around the country to different types of care communities for ideas. They were particularly impressed with visits to Green House Project sites and began educating themselves and other Elders about the model. One Elder arranged a meeting between the community’s Board Chair and President/CEO and the President of one Green House Project to discuss the cost effectiveness of the model. Elders made several additional trips to different Green House Projects, leading to their decision to bring the Green House model to their community. Elders started a new committee to advise the board, attorneys, and Green House developers about their wishes. Finally, after years of struggle and educating the board, plans to build a Green House were developed. A resident who had experience in engineering convinced the board, along with the residents committees, that the Green Houses were not only what the residents wanted, but that it was also affordable.

Today, Elders are thriving and empowered in the Green Houses that are true homes, not “facilities. Thanks to Elders who fought for person-directed care. The Green Houses are two to each floor in a four- story high rise. Each house has private bedrooms and baths, lots of natural light, and open kitchens. Elders are respected and direct their care and daily living.  Elder empowerment continues and several of the original residents who fought to bring the model to the community are now Sages—Elders who take on the role of teaching the Shahbazim (staff) what they and their fellow Elders want and need.

The culture change movement in LTC can’t exist unless Elders are empowered. With regard to residential care, this means developing self-directed communities where, “…care and services are directed by residents… and where, “…residents are the center of the universe” (Boyd, 2012). LTC may be moving more towards person-centered care, however, much is still to be done to challenge ageism wherever it may be found. Empowering Elders to use their voices will empower a movement of people who will demand change and find innovative ways to go about it.

July 2018

 

*The author wishes to thank the Elders who took time to tell this story in order to inspire others

2 comments on “Empowering Elders: How Residents Fought for and Won Person-Directed Care

  1. Nila Reimer, PhD, RN, CNE on

    Thank you for sharing your important message. I completed a research study where I interviewed residents and asked them to share what meant most to them during their care. Accepting life in the nursing home, Enduring Loss, Relishing good care, and Getting by were clusters that emerged from the interviews. Many of the residents’ stories reflected person-centered concepts. I hope to share my study findings at a Pioneer Network conference soon!
    Nila Reimer, PhD, RN, CNE

    Reply
    • Cathy Lieblich on

      Please do submit a session proposal for the 2019 Pioneering a New Culture of Aging Conference in Louisville when the request for proposal comes out, Nila. Thank you for your comment.

      Reply

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