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When a person moves into a long-term care setting, they are granted additional rights and protections under the Nursing Home Reform Act of 1987. Resident’s Rights Month is celebrated in October each year, and it serves as a time to honor the additional rights of those who live in long-term care communities. This year, the Live Oak Project is taking this time as an opportunity to celebrate the dignity and rights of those who live in long-term care, but also to reflect on the ways in which residents’ rights have been gravely affected, if not wholly violated, in light of the devastation that the COVID-19 pandemic has caused in long-term care settings.
The Live Oak Project, a grassroots culture change movement, is dedicated to reimagining, redesigning, and transforming the long-term services and support system so that each person can thrive. This burgeoning and bold culture change movement was formed in response to the catastrophic deaths of nursing home residents and staff during the COVID-19 pandemic resulting from a failed long-term care system.
Several of the foundational pillars which support the mission and vision of the Live Oak Project boldly advocate for the radical transformation of all aspects of policy and practice, which collectively shape the structure and culture of long-term care communities. Central to the transformation of this structure is conceptualizing it as one whole integrated, interactive system, one that has the potential to engender a culture that is grounded in empowering communities while maintaining and supporting the autonomy of each individual.
This year, for Residents’ Rights Month, we reflect on how the structure of a long-term care community is shaped by the built environment which encompasses it. We boldly advocate for a recognition of the inadequate qualities of institutional architecture as a pervasive form of discrimination against those who live in long-term care. We boldly advocate for a recognition of this architecture as a form of structural violence that continues to cause harm and is a serious infringement of the basic human rights of people who live in long-term care. We call for a recognition of institutional qualities as an overt form of ageism and ableism that continues to go unaddressed and unacknowledged in our society.
This year, for Residents’ Rights Month, and in alignment with the mission and vision of the Live Oak Project, we advocate for two additional residents’ rights regarding the environment and resident caregivers. We advocate for:
The right to live in a short-term or long-term care setting which is a home. We define the qualities of a home through the lens of basic human rights. We believe that everyone who lives in a home that is structured by the long-term care system has the right to:
accessible private rooms, and private bathrooms.
natural and good lighting.
plenty of common space.
good air circulation.
access to the outdoors.
The right to have regular caregivers who are familiar to the resident. We believe that the highest quality of care can be attained when the caregiver knows the resident well enough to learn their routines, likes, dislikes, etc., and therefore is able to personalize and customize the resident’s care according to the resident’s preferences. We believe that the cycle of staff turnover is harmful to residents and that all efforts, including adequate government funding, must be made to recruit and retain regular, familiar caregivers.
Live Oak Project believes that the reimagined culture of the system of long-term care will be a culture grounded in empowering communities that support each person’s autonomy. This vision of a community that is built atop principles of dignity and citizenship cannot be achieved until institutional qualities are recognized as a form of discrimination and the built environment is honored as a basic human right. The culture of this new vision of a long-term care community will assist each person to achieve their individual goals as well as a meaningful life physically, mentally, emotionally, spiritually and socially and is appropriate to the cultural and religious needs of each individual. This vision cannot manifest until quality of care is expanded to encompass familiar caregivers, and competent, personalized care is recognized as a right.
Rick Gamache is the CEO of Aldersbridge Communities, a RI-
based not-for-profit provider of health care and housing for
low-income elders. He is a member of the Live Oak Project
Steering Group, and the former board chair of The Eden
Alternative.
Kate Poppenhagen works in Larimer County Colorado as a
Long-term care ombudsman. She is a member of the Live Oak
Steering Group and is an ally for those who live in long-term
care and a radical advocate for culture change.