Elevating Patient and Family Voices to Improve Nursing Home Care

Grantee Name

Long Term Care Community Coalition

Funding Area

Empowering Health Care Consumers

Publication Date

August 2022

Grant Amount

$190,700

Grant Date:

August 2018 – December 2020

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More than 50% of U.S. seniors will need nursing home care at some point—including more than 105,000 people per year at nearly 625 nursing homes in New York State.

Despite the critical services nursing homes provide for New York State’s aging population, widespread problems persist. Safe, high-quality, person-centered care that maintains the wellbeing of our frailest New Yorkers has become the exception, rather than the rule. In 2017, a federal study found that New York State failed to ensure that inspection violations were corrected by nursing homes. In the absence of effective enforcement, it is vital that residents, their families, and representatives, such as ombudsman programs, know about nursing home standards and resident rights. With this knowledge and the appropriate tools, they can advocate effectively to improve care and reduce abuse and neglect in nursing homes.

NYHealth previously awarded the Long Term Care Community Coalition (LTCCC) a grant to ensure that New York State nursing home residents and their families were aware of care standards and resident rights by hosting monthly webinar trainings and an in-person conference. NYHealth awarded LTCCC a second grant to continue engaging, educating, and empowering family members and representatives.

Outcomes and Lessons Learned

Outcomes and Lessons Learned:

Under this grant, LTCCC:

Developed a website with educational resources for residents, families, and ombudsman programs. After one year, the website had 75,000 page views, with more than 17,000 total users and more than 16,000 new users.
Created and distributed a Family Council Toolkit with practical resources to form and operate family councils.
Created a primer on nursing home quality standards that was disseminated statewide to long-term care (LTC) ombudsman programs, which advocate for residents of nursing homes, board and care homes, and assisted living facilities.
Developed an online platform to collect resident and family stories about experiences with nursing home care, which were used in advocacy with federal and State policymakers.
Conducted quarterly webinars and three in-person trainings with local ombudsman programs on topics such as nursing home abuse, neglect, and crime; nursing home profits and losses; resident/family rights; and facility staffing and its effect on residents’ care.
Broadened its wide-ranging partnerships with organization such as the Alzheimer’s Association, CaringKind, AARP NY, and other aging and grassroots organizations.
Hosted two statewide symposiums on resident rights and the roles of family, ombudsmen, and family councils. The second symposium in 2020, held during the COVID-19 pandemic, was a critical forum for sharing more about resident and family rights under federal and State law.

LTCCC had garnered a reputation among stakeholders as a trusted and go-to resource through its longstanding work in producing vetted, user-friendly resources for residents, families, and ombudsmen. This allowed LTCCC to have strong buy-in and support from the New York State LTC Ombudsman Program, which was essential in encouraging local ombudsman programs to participate in educational and advocacy activities as well as share resources with residents and families. Despite its impressive reach, LTCCC continued to grapple with how to best evaluate its impact and the extent to which resources were making it into the hands of families and improving residents’ care experiences.

The COVID-19 pandemic compelled LTCCC to adjust its activities, as nursing home care and family engagement were dramatically disrupted. LTCCC took on the critical role of making sure that residents and families knew their rights in the face of evolving and rapidly changing policies and restrictions related to nursing homes. Previously, families had provided vital monitoring and care for residents, in light of nursing home staffing shortages. The suspension of visits during the pandemic prevented families from serving as on-site representatives and likely put residents in jeopardy. To address this gap, LTCCC—with the help of ombudsman programs and other partners—created and distributed timely resources for families on resident rights. LTCCC also created online spaces for family councils across the State to meet, providing them with Zoom access and technical assistance. NYHealth supported these additional activities through a modest increase to the original grant award.

Co-Funding and Additional Funds Leveraged: None

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