Pursuing Quality Long-Term Care Podcast

M.T. Connolly is a writer, lawyer, researcher, policy-shaper, and leading national expert on elder justice. In her new book, The Measure of Our Age: Navigating Care, Safety, Money, and Meaning Later in Life, M.T. discusses the challenges of aging, how things go wrong, and presents powerful tools we can use to forge better long lives for ourselves, our families, and our communities. In this episode, join our discussion with M.T. Connolly as we talk about the challenges of aging well, ageism, and advocacy for a better long-term care system. 

About the Author: M.T. Connolly is a leading national expert on elder justice, a MacArthur “genius” grant awardee, and author of the 2023 book, The Measure of Our Age: Navigating Care, Safety, Money, and Meaning Later in Life. She was the architect of the federal Elder Justice Act, founder of the Department of Justice’s Elder Justice Initiative, and lead author of the Elder Justice Roadmap, shaping federal, state, and local research, policy, and practice. She is also co-designer of the community-based “RISE” model intended to introduce holistic, hopeful, and effective ways to empower older adults, reduce harms, and promote elder justice.

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For decades Consumer Voice has designated October as Residents’ Rights Month. This month is an opportunity to recognize the value of each resident and the importance of treating every resident with dignity and respect. This year’s theme, Amplify Our Voices, highlights residents coming together to make their voices heard.

In this episode, join us as we speak with two resident advocates. Floyd Hartley is a former nursing home resident who now lives in the community and works as an advocate for all residents including those transitioning out of facilities. We also spoke with Cindy Napolitan, a current nursing home resident that has lived in two different nursing homes for over six years and has advocated for herself and others at the local, state, and federal level during that time.

Floyd and Cindy discuss how they work to improve conditions for nursing home residents. Their constant effort and advocacy illustrate how residents can use their own voices to make systematic change for consumers in long-term care facilities.

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Residents' Rights Month is celebrated every October and this year’s theme, Amplify Our Voices, emphasizes a community of long-term care residents coming together to make their voices heard. As we lead into Residents’ Rights Month, Consumer Voice spoke with two State Ombudsmen, Kelly Richards (Illinois) and Mairead Painter (Connecticut), who shared their experiences of amplifying the voices of long-term care consumers in their advocacy work.

In this episode, Kelly and Mairead discuss a variety of ways that long-term care consumers in their states have advocated to make positive change, including using the media, working with legislators, and sharing their personal experiences and stories. Kelly and Mairead also talked about actions Ombudsman program representatives can take to incorporate the voices of residents in their advocacy.

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When a person enters a nursing home, one of the first things they usually do is sign their admissions contract. Typically, these contracts contain pre-dispute arbitration agreements. These agreements take away your right to hold your nursing home accountable in court for any potential negligence or wrongdoing. “Pre-dispute” arbitration agreements require you to give up this right before the harm even occurs so you will never have the chance to decide if going to court is the right option for you. Nursing home residents have the right to refuse pre-dispute arbitration. 

In this episode, Consumer Voice's Jocelyn Bogdan speaks with Victoria Schall, a trial attorney experienced in filing civil lawsuits against facilities for abuse and neglect of residents, about why nursing home residents should not sign pre-dispute arbitration agreements, what rights residents have regarding these agreements, and what arbitration may look like for residents who have already signed their contracts.

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Few lawsuits make it all the way to the U.S. Supreme Court. However, one brought by the family of Gorgi Talevski did just that–and they won! The Talevski case decision is important in that it addresses the rights of nursing home residents, their ability to sue a state run (publicly owned) nursing home, and addresses the importance of the Nursing Home Reform Act in establishing the standard of care. 

Join our discussion with Suzana Talevski, attorney and daughter of Mr. Talevski; Maame Gyamfi, Senior Attorney at AARP Foundation Litigation; and Toby Edelman, Senior Policy Attorney with the Center for Medicare Advocacy. Ms. Gyamfi authored an amicus curiae, or friend of the court, brief on behalf of AARP and several other groups, including Consumer Voice. Ms. Edelman authored an amicus brief addressing the background and history of the Nursing Home Reform Act. In this episode, we discuss the lawsuit, the Supreme Court decision, and what this means for residents. 

To access the U.S. Supreme Court decision and briefs filed in this case, visit the U.S. Supreme Court website, Docket No. 21-806. 

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Although LGBTQ+ community members have the same rights as all other long-term care consumers, they often face hardship, such as discrimination and stigma, that their straight and cisgender counterparts do not. Even before entering long-term care, LGBTQ+ individuals are often concerned about whether the facility will accept them as who they are, and whether they will feel comfortable having partners and friends visit. LGBTQ+ older adults are less likely to have children to care for them and are more likely to live alone without a caretaker. Many LGBTQ+ older adults are not “out” because they fear discrimination.

In this episode, we are joined by Sherrill Wayland, Director of Special Initiatives at SAGE (Services and Advocacy for LGBTQ Elders), the largest organization improving the lives of LGBTQ+ older adults, advocating for the community since the 1970s. Sherrill discusses some of the challenges these residents face, what questions LGBTQ+ older adults should ask when comparing facilities, and best practices for facilities to train staff and maintain an inclusive community. Despite the challenges that exist, Sherrill shares some encouraging indicators of progress among facilities in states across the country. 

For resources for LGBTQ+ residents and support from the National Long-Term Care Ombudsman Resource Center, visit the NORC website. To access SAGE resources for LGBTQ+ older adults, including its National LGBTQ+ Elder Hotline, visit www.sageusa.org.

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Consumer Voice has long been concerned with the use of antipsychotics and other drugs in long-term care, as they are too often used as chemical restraints in place of providing adequate care. In this episode, Consumer Voice Executive Director, Lori Smetanka, is joined by award-winning writer/director Susie Singer Carter and former federal prosecutor Rick Mountcastle to discuss their upcoming documentary, No Country for Old People. Susie and Rick are collaborating on the film to promote conversations about the improper treatment and poor conditions many individuals in long-term care endure and spur action to address these failures in care. The documentary was inspired by Susie’s mother and the ordeal she experienced in what was advertised as a five-star long-term care residence in Los Angeles. 

Without Susie’s consent, her mother was given Depakote, a medication that was not approved for the treatment of dementia-related agitation. When she eventually came off the drug, which had a black-box warning, Susie noticed her mother’s personality return to a limited degree, but her quality of life significantly worsened, and she would never walk again. As was true for many with family members in long-term care, the COVID-19 pandemic drew the curtain on what was really going on, even in reputable facilities. Susie connected with Rick, who led the investigation and charges against Depakote’s manufacturer, Abbott Laboratories. Rick is also known for his prosecution of Purdue Pharma and its top executives for the false marketing of oxycontin and their contribution to the opioid crisis in America, as featured in the miniseries Dopesick. After they spoke, Susie realized that the use of chemical restraints in long-term care – as well as harmful neglect of residents – were systemic issues nationwide, not limited to her mother’s facility in California. The two teamed up to co-produce the documentary, united in their sense of urgency to make this story heard.

Consumer Voice agrees that a culture change is necessary to hold these facilities – many of which receive public funds – accountable for how they treat their residents. No Country for Old People is in development, but Susie and Rick intend to make the film available to as many people as possible. To learn more about the documentary or to donate to its production, please visit act.theconsumervoice.org/documentary.

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The US Surgeon General referred to the epidemic of loneliness and social isolation in the United States as a public health crisis with profound consequences, and emphasized the need to prioritize social connections. Throughout the COVID-19 pandemic, perhaps no community was more impacted by loneliness and isolation than people living in long-term care. This seclusion led to many emotional, physical, and psychosocial health consequences. 

In this episode, we speak with Dr. Susan Wehry, a nationally recognized keynote speaker and workshop facilitator on depression, dementia, and healthy aging, about the impacts of severe isolation and extreme loneliness many residents have experienced, not just during the pandemic, but before and after. Dr. Whery discusses the value of being heard and ways staff, family members, and friends can work to help combat loneliness in long-term care moving forward.

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As we are finding our way out of the COVID-19 pandemic and Public Health Emergency (PHE) that devastated so many lives – particularly in nursing homes – there is an opportunity to look back at what happened, both the good and the bad, and find the lessons we can learn from to perhaps do better in the future. This is particularly true in evaluating what was happening in long-term care facilities prior to and during the pandemic that affected their response to COVID-19, and the subsequent increase in staffing shortages that many facilities are experiencing.   

In this episode, Consumer Voice Executive Director, Lori Smetanka, talks with David Farrell, a licensed nursing home administrator who has spent his entire career in the long-term care profession, about the long-term care facilities that had better outcomes than their peers, or as David notes, facilities that “weathered the storm of COVID-19 and staffing crises.”

David and his colleagues did a deep dive into those facilities that were outliers or stood out from their peers with regard to COVID-19 infections and staffing shortages, to try to determine what was happening that we could learn from, and hopefully replicate. 

Resource: Sharing Lessons From Successes

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February marked the one-year anniversary of President Biden's announcement of historic nursing home reforms. Creating a minimum staffing standard, which would be the most significant increase in protections for nursing home residents in decades, was central to his plan. In this episode, we are sharing the audio from Consumer Voice’s webinar that was part of the “Dignity for All: Staffing Standards Now!” campaign. This campaign is advocating for a minimum staffing standard in nursing homes.

This discussion highlighted how there is little accountability for how nursing homes spend taxpayer dollars, despite receiving tens of billions of dollars each year in Medicare and Medicaid dollars. In this episode, you will hear Consumer Voice and Ernie Tosh discuss the new report, “Where do the Billions of Dollars Go? A Look at Nursing Home Related Party Transactions.” The report takes an in-depth look at how nursing home owners and operators funnel billions of dollars through companies they own with little to no accountability for how that money is used each year. They also offer examples and solutions to address this industry-wide problem to ensure public dollars are going toward resident care.

Resources: Webinar Slides | Report: Where do the Billions of Dollars Go? A Look at Nursing Home Related Party Transactions | Dignity for All webpage

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February marked the one-year anniversary of President Biden's announcement of historic nursing home reforms. Creating a minimum staffing standard, which would be the most significant increase in protections for nursing home residents in decades, was central to his plan.  In this episode, we are sharing the audio from Consumer Voice’s webinar that was part of the “Dignity for All: Staffing Standards Now!” campaign. This campaign is advocating for a minimum staffing standard in nursing homes.

This discussion highlighted the experiences of long-term care residents as they shared, in their own words, how living in a facility with inadequate staffing affects their quality of life and the quality of care that they receive, and what it would mean for their lives to live in a facility with enough staff.

Resources: Webinar Slides | Dignity for All webpage

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February marked the one-year anniversary of President Biden's announcement of historic nursing home reforms. Creating a minimum staffing standard, which would be the most significant increase in protections for nursing home residents in decades, was central to his plan. In this episode, we are sharing the audio from Consumer Voice’s webinar that was part of the “Dignity for All: Staffing Standards Now!” campaign. This campaign is advocating for a minimum staffing standard in nursing homes.

The implementation of a minimum staffing standard would not only protect nursing home residents it would address the long-standing job quality problems that plague nursing homes. On average, nursing home staff turnover is 52% each year, which is the result of low-wages, poor benefits, inadequate training, and little opportunity for job growth. The burden of providing essential and critical care falls largely on women, a majority of whom are women of color, while they are treated poorly by nursing home owners and operators. In this episode, you will hear a conversation with Consumer Voice and several direct care workers, also members of the Service Employees International Union, who discuss what it is like to work in an understaffed facility and what a minimum staffing standard would mean to direct care staff in nursing homes.

Resources: Webinar Slides | Dignity for All webpage

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This month marks the one-year anniversary of President Biden's announcement of historic nursing home reforms. Creating a minimum staffing standard, which would be the most significant increase in protections for nursing home residents in decades, was central to his plan.

In this episode, we are sharing the audio from Consumer Voice’s webinar earlier this month that launched our “Dignity for All: Staffing Standards Now!” campaign. Through this campaign, Consumer Voice is advocating for a minimum staffing standard in nursing homes. In this episode you will hear about the importance of adequate staffing for residents’ safety and health from Sam Brooks at Consumer Voice, and Toby Edelman, at the Center for Medicare Advocacy. You will also hear from Shelley Jackson, a CNA in Pennsylvania, and Margarite Grootjes, a resident in Ohio, as they share what it is like to live and work in a facility without adequate staffing.

Resources: Webinar Slides | Dignity for All webpage

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Intimacy and sexual expression are basic human rights and are needed throughout our lifespan. Aging does not mean a loss of sexual intimacy, but when an older adult is cognitively impaired, it can be difficult to determine if they are engaged in a healthy sexual relationship. The right to freedom of sexual expression among these populations has proven a sensitive and sometimes controversial topic, particularly when cognitive capacity is in question. By federal law, individuals residing in long-term care are afforded multiple rights, many of which are relevant to sexuality, such as privacy, confidentiality, the right to make independent choices, and the right to choose visitors and meet in a private location.
 
In this episode, we are joined by Patty Ducayet, Texas State Long-Term Care Ombudsman, to explore the complex issues surrounding the ability to consent to sexual activity among long-term care residents and supporting a resident’s right to intimacy and sexual expression. 

Resources

• NORC Issue Page: Sexuality and Intimacy in Long-Term Care Facilities
• Texas Ombudsman Program Webinar PowerPoint on Sexual Expression in Long-Term Care – An Advocate’s Guide
• Sexual Abuse in Nursing Homes: What You Need to Know Note: This podcast episode did not cover sexual abuse. Review this issue brief for more information on sexual abuse in nursing homes.

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Recent CMS data shows that only 46% of nursing home residents are up to date on their COVID-19 vaccinations. That percentage is even lower for nursing home staff, 23.1%. COVID-19 cases and deaths are rising across the country, while at the same time seasonal influenza and RSV cases are also causing hospital beds to be full.

This podcast features Dr. Celine Gounder who discusses the importance of nursing home residents and staff being up to date with their COVID-19 vaccinations. Dr. Gounder addresses questions about the efficacy of boosters and also how frequently nursing home residents and staff should be receiving them.

Dr. Gounder is a Senior Fellow and Editor-at-Large for Public Health at the Kaiser Family Foundation and for Kaiser Health News. She is also a Clinical Associate Professor of Medicine and Infectious Diseases at New York University’s Grossman School of Medicine. She cares for patients on the wards at Bellevue Hospital Center. She served on the Biden-Harris Transition COVID-19 Advisory Board.

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As the result of changing CMS and CDC guidance since the start of the pandemic, residents and families have had a great deal of uncertainty during the holidays surrounding visitation and the requirements for residents who leave their facilities. Jerry Rothkoff, of Rothkoff Law Group, joins us to talk about where visitation is now, almost three years into the pandemic, and how everyone can spend time safely together this holiday season.

Resource: Newsletter by the Rothkoff Law Group: Can Nursing Home Residents Leave the Facility for the Holiday? | Consumer Voice Article on Spending Time with Loved Ones During the Holidays

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For decades the Consumer Voice has designated October as Residents’ Rights Month as a way to honor residents living in long-term care. This month is an opportunity to focus on the commitment to recognize the value of each resident and the importance of treating every resident with dignity and respect. In this episode, join us as we speak about this year’s Residents’ Rights Month theme, Inspiring Unity within Our Community. Lori Smetanka, Executive Director at Consumer Voice, and Jocelyn Bogdan, Senior Policy Specialist at Consumer Voice discuss why having a community is important, how residents can exercise their rights around their community, and examples of ways residents, families, and staff can help build a community for residents living in long-term care.

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Abuse is defined in the federal nursing home regulations as the willful infliction of injury, unreasonable confinement, intimidation, or punishment with resulting physical harm, pain, or mental anguish. It can take many forms including physical abuse, verbal, sexual, mental, emotional, and financial. Even though federal law states that residents of long-term care facilities have the right to be free from abuse, it still does occur and is largely under-reported and inadequately investigated and addressed.

In this episode we are talking with Dr. Laura Mosqueda, a professor of Family Medicine and Geriatrics, and Beverley Laubert, the National Ombudsman Program Coordinator at the Administration for Community Living about abuse of those living in long-term care facilities – an issue that affects thousands of residents of nursing homes, assisted living facilities, and other long-term care settings.

Recent data indicates increased concern about incidences of abuse in long-term care facilities. That, along with the fact that June 15 is designated as World Elder Abuse Awareness Day (WEAAD), made us think it was important and timely to talk about this issue.

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Research has shown that staffing in nursing homes - numbers of staff, skills mix, and training - are critical indicators of quality care and positive resident outcomes. Yet too many nursing homes are understaffed, and the long-term care industry claims it does not have the resources to hire more staff. But is that really true? Listen in for a discussion with David Brevda, Esq., Partner, Senior Justice Law Firm, and Robyn Grant, Director of Public Policy at Consumer Voice about how complex facility practices and resource allocation, combined with a lack of minimum standards, put residents at risk for poor care and bad outcomes; as well as recommendations for addressing these problems.

Resources: Senior Justice Law Firm | David Brevda Bio | Consumer Voice Report: State Nursing Home Staffing Standards

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The most significant nursing home reforms in decades were announced in February 2022. The reforms include the creation of a minimum staffing standard in nursing homes, accountability for poor performing nursing homes, increased transparency around ownership and finances, and support for direct care staff. These reforms are critical and urgently needed to address the inadequate conditions many residents face in their day-to-day lives. 

In this episode we continue our conversation with long-term care residents about the importance of these reforms. We speak with two residents to discuss the problems they face in their day-to-day lives from inadequate staffing, the ways nursing home ownership has impacted their lives throughout the pandemic, as well as what can be done to improve their lives in long-term care.

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In this episode, we take a deeper look at the Biden Administration's nursing home reforms, announced on February 28, 2022. These reforms include the most significant improvements to nursing homes in decades.

We are joined by Sam Brooks and Jocelyn Bogdan of Consumer Voice, who break down the five categories of the reforms including (1) Ensuring taxpayer dollars support nursing homes that provide safe adequate, and dignified care; (2) Enhancing accountability and oversight; (3) Increasing transparency; (4) Creating pathways to good-paying jobs with the free and fair choice to join a union; and (5) Ensuring pandemic and emergency preparedness in nursing homes. These reforms are critical to addressing the inadequate conditions many residents face in their day-to-day lives. 

Resource: Summary of the Biden-Harris Administration Nursing Home Reforms

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On February 28, 2022, the Biden Administration announced it would be implementing new nursing home reforms including the creation of a minimum staffing standard in nursing homes, accountability for poor performing nursing homes, increased transparency around ownership and finances, and support for direct care staff. These reforms are critical and desperately needed to address the inadequate conditions that many residents face in their day-to-day lives.  

In this episode, we speak directly with two long-term care residents, in Texas and Ohio, about the importance of these reforms, the problems they face in their day to day lives from inadequate and untrained staff, and what other improvements they would like to see that would help improve their lives in long-term care.

Resources

• Inadequate Staffing During the COVID-19 Pandemic and Its Catastrophic Effects on Nursing Homes Residents
• Staffing in Nursing Homes
• March Forth Together
• COVID-19 in Long-Term Care Facilities

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The pandemic has renewed concerns about the quality of care that residents receive in some nursing homes, and many family members have reported significant decline in the condition of their loved ones. Neglect and abuse of older adults is a long-standing problem that is under-reported and has not received the necessary attention and response from policymakers, yet it results in needless and preventable suffering and harm.

In this episode with Dr. Laura Mosqueda, a professor of Family Medicine and Geriatrics at the Keck School of Medicine at the University of Southern California, we talk about neglect, which is the failure to provide goods and services to an individual that are necessary to avoid physical harm, pain, mental anguish, or emotional distress. Neglect may or may not be intentional. 

Resources

• Consumer Fact Sheet - Nursing Home Neglect: Preventing It and Getting Help
• Video

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On November 12, the Centers for Medicare & Medicaid Services (CMS) issued updated Nursing Home Visitation Guidance. Because of the high rates of vaccination among residents and the new vaccine requirement for staff, as well as the reduced number of new COVID-19 cases each week, visitation is now allowed at all times for all residents, this includes indoor visitation. In this episode, Jocelyn Bogdan from Consumer Voice goes through the updated guidance and talks about what rights residents of nursing homes have.

Resources:

• CMS Revised Nursing Home Visitation Guidance, updated November 12, 2021
• Consumer Voice Summary of the Guidance

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In this episode we are sharing with you a discussion that was held on Facebook Live around residents' rights in nursing homes. Lori Smetanka, Consumer Voice’s Executive Director, and Jocelyn Bogdan, Program and Policy Specialist at Consumer Voice talk about what impact COVID-19 has had on residents and their exercising of rights, they also provided an over