Pursuing Quality Long-Term Care Podcast

During this time of year nursing homes can expect to see an increase in people visiting their loved ones. This increase puts everyone at a higher risk of catching a cold or respiratory illnesses. Join us for a conversation as we dive into the latest CDC guidance on respiratory illnesses, including COVID-19, for nursing home residents. We are joined by Dr. Erika Wallender from the CDC, and Lori Walsh, Consumer Voice Policy and Program Specialist, to discuss practical steps in reducing infection risks and best practices for staying safe during this upcoming respiratory season. We also remind residents and their families of their rights and protections while navigating life in a nursing home.

Hide text

Election season is an exciting time that offers a renewed opportunity to shape public policy. For many long-term care residents, voting is a patriotic duty that has been respected and exercised over the course of their lifetime. Residents of long-term care have the same right to vote as everyone else. Join us for a conversation with Gwen Orlowski, Executive Director of Disability Rights New Jersey to discuss how residents and their families can ensure their voices are heard in the upcoming elections.

Hide text

Guardianship is a tool intended to support individuals who have lost the capacity to make decisions for themselves. However, guardianship is an extreme step and can have a devastating impact on a person's well-being. In this episode, we will discuss guardianship over residents of long-term care facilities, less restrictive alternatives, and strategies for supporting residents under guardianship. 

Hide text

Retaliation, and the fear of retaliation, can prevent residents and family members from raising their concerns about care and safety. It also has a chilling effect on the reporting of abuse or neglect in long-term care facilities, leaving many living in fear and without relief from harm. Retaliation can range from very subtle to obvious actions and it may be difficult to determine whether staff are retaliating or if a resident’s needs are not being met for another reason, such as understaffing. Retaliation is never acceptable; it is a violation of the resident's rights. In this episode, join us for a conversation with an Ombudsman, a long-term care resident, and a gerontologist as we discuss how to identify retaliation, action steps to take when it does occur, and how to advocate to prevent retaliation from happening in the future.

Hide text

In April 2024, a new federal rule requiring minimum staffing levels in nursing homes was released. This rule is an important step toward improving quality conditions in nursing homes and ensuring that residents receive the care they need. Listen in on a discussion between Consumer Voice's Lori Smetanka and Sam Brooks, who talk about the importance of the rule, what it says, and how we can start thinking about using it in advocating for quality care. Read Consumer Voice's summary of the rule.

Hide text

The Centers for Medicare and Medicaid Service’s (CMS) new minimum staffing standard requires facilities to provide 3.48 hours of care per resident per day. That translates into three hours and 29 minutes of care over 24 hours for each resident. This number is lower than what Consumer Voice and other consumer advocates, nursing professionals, and nursing home residents have been advocating for, for years. This number is lower than what studies have shown, for decades, will keep nursing home residents safe, but it will still raise staffing levels at many facilities.

In this episode, you will hear an important conversation between four nursing home residents about their personal experiences with understaffing, their thoughts on the new minimum staffing standard released by CMS, and their plans for advocating for themselves and others moving forward. The residents in this conversation are all part of Consumer Voice’s Consumer Advisory Council and we are grateful they made the time to share their thoughts with us.

Hide text

Every April, organizations across the country take the time to celebrate and thank their volunteers. Volunteers are the backbone of many Long-term Care Ombudsman Programs (LTCOP). With the help of volunteers, the Ombudsman program can have a regular presence in facilities and stay in touch with residents. Volunteers lend their time, talent, and voice to make a difference in their communities and the LTCOP could not be its best without the volunteers who help carry out the mission of advocating for long-term care residents. 

In this episode, the National Ombudsman Resource Center (NORC) talks to a certified volunteer from New Jersey about her experience and dedicated advocacy. The Administration for Community Living (ACL) also joins to honor the over 4,000 people who serve as Long-Term Care Ombudsman volunteers. These specially trained volunteers visit nursing homes and residential care communities to advocate with and for the residents living there. By visiting on a regular basis, volunteers get to know residents and gain their trust to better assist them in resolving issues or complaints to help ensure they receive quality long-term care.

Hide text

Since the pandemic began, there has been significant efforts by advocates to create better laws and regulations to protect nursing home residents. The pandemic and its devastating impact on nursing home residents has resulted in many states passing new laws or creating new regulations regarding a variety of areas, including staffing, transparency, and the nursing home workforce.

On this episode, you will hear from two advocates that have been successful in getting new laws and regulations passed and promulgated. Tony Chicotel, Senior Staff Attorney at California Advocates for Nursing Home Reform and Pam Walz, Supervising Attorney at Community Legal Services in Philadelphia, will discuss recent legislative and regulatory victories and how they helped ensure they were implemented.

Hide text

Often the conversation about addressing the chronic poor care that exists in far too many of today's nursing homes is framed around new laws or regulations. Yet, there are steps that can be taken now - using existing federal and state legal authority - to improve care and conditions in our country's nursing homes. In our conversation, we will discuss four levers of opportunity for increasing quality and accountability in nursing homes with the author of Using What We Have: How Existing Legal Authorities Can Help Fix America's Nursing Home Crisis.

Hide text

Family caregivers have always played an integral role in promoting and achieving quality care for their loved ones living in a long-term care facility. The importance of the informal care and support provided by family members for a resident's physical, mental, and emotional well-being became abundantly clear during the pandemic when those essential supports were taken away during the pandemic. Yet, advocacy and engagement by family members benefits not only their own loved ones, but ultimately all residents in a long-term care facility. In our conversation, we discuss how families can individually and collectively, through family councils, be a strong voice for quality and for change in nursing homes. 

Hide text

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.

Hide text

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.

Hide text

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.

Hide text

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.

Hide text

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. 

Hide text

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.

Hide text

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.

Hide text

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.

Hide text

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

Hide text

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

Hide text

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

Hide text

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

Hide text

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

Hide text

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.

Hide tex

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 Transi