July 6, 2021

In this Issue:

1. Reports Show Limits on Visitation Continue to Harm Residents
2. Essential Caregivers Act Roundtable
3. A Consumer Driven Research Agenda to Study Nursing Homes/Assisted Living Facilities and the COVID-19 Pandemic
4. HRC Foundation and SAGE Create Long-Term Care Equality Index

Reports Show Limits on Visitation Continue to Harm Residents

Despite the efficacy of COVID-19 vaccinations, the precipitous decline of COVID-19 cases and deaths in nursing homes, and the relaxation of some visitation restrictions, residents and families continue to face limitations on visitation and daily activities.  In January, Consumer Voice released a report detailing the devastating effects of lockdowns on nursing home residents. Six months later, Consumer Voice is still hearing from residents and families that residents are suffering from visitation limitations.  Additionally, residents continue to be significantly limited in their activities inside facilities, including being confined to their rooms, being unable to dine communally, and having little or no group activities.  

In May, Consumer Voice began to survey both residents and families to gauge the current effects of visitation and activity limitations in nursing homes.  Families continue to report severe physical and mental decline of residents worsened by arbitrarily applied visitation policies. In addition, residents said they faced significant barriers to visitation and were struggling with isolation inside the facility because of limits on movement and group activities.  

Consumer Voice has released reports on both surveys:

• Limitations on Visitation and Daily Activities Negatively Impact the Lives of Nursing Home Residents: A Survey of Residents
• Limitations on Visitation Continue to Harm Nursing Home Residents: A Survey of Residents' Families

The reports show that limitations on visitation and daily activities continue to harm residents. The reports’ findings also support Consumer Voice’s call for the lifting of all restrictions on visitation.

Essential Caregivers Act Roundtable

The Essential Caregivers Act  (H.R. 3733)  is bipartisan legislation that would give nursing home residents the right to have access to two "essential caregivers" to provide care, support, and companionship during any public health emergency. Essential caregivers would be permitted to visit even if visitation were restricted, as it has been during the COVID-19 pandemic. The purpose is to ensure that residents never again suffer from isolation and neglect because they are completely cut off from family or other individuals who provide crucial assistance and support to them. Essential caregivers would be required to follow the same safety and infection prevention protocols as staff. The bill was introduced by Congresswoman Claudia Tenney on 6/4/21.

Last week, Congresswoman Tenney and Congressman John Larson hosted a roundtable discussion explaining the importance of the Essential Caregivers Act to congressional staff and Members of Congress. The video of the roundtable is available on Congresswoman Tenney's Facebook page.

Consumer Voice submitted a written statement in support of the legislation, and Director of Public Policy and Advocacy, Robyn Grant, recorded a statement that was aired during the discussion.

A Consumer Driven Research Agenda to Study Nursing Homes/Assisted Living Facilities and the COVID-19 Pandemic

In the paper "A Consumer Driven Research Agenda to Study Nursing Homes/Assisted Living Facilities and the COVID-19 Pandemic" published in March 2021, author Alice H. Hedt, MUA, convened advocates for long-term care consumers to identify research areas based on what they heard from consumers and witnessed themselves prior to and during the early months of the pandemic.

The advocates identified four major research areas:

• Factors that impacted resident and staff infection and death rates;
• Federal and state government policies;
• Facility specific policies and procedures in response to COVID-19; and
• The resident experience including impacts on family, friends, and staff.

This consumer-driven research could influence policy makers and providers at every level in short-term and long term decisions.

Read the paper.

HRC Foundation and SAGE Create Long-Term Care Equality Index

The Human Rights Campaign (HRC) Foundation and SAGE have created the first edition of the Long-Term Care Equality Index (LEI).

This national benchmarking tool evaluates long-term care communities based on the equity and inclusion of their LGBTQ residents and patients. This initial report does not score long-term care communities but instead includes research data on how many long-term care communities currently have LGBTQ-inclusive policies, a list of LEI Pioneering Participants, community profiles, and lays out how organizations can participate in the LEI and improve their policies.