There is a great wealth of resources available "out there" that many are not aware exists.

THIS ONE IS FOR ADVOCACY with your POLICY-MAKERS!   LTCCC has published a guidebook to educate and inform lawmakers how they can both assist constituents with individual concerns and impact the development of policies to improve care in nursing homes. 

Justice in Aging has updated its essential guide, 25 Common Nursing Home Problems – & How  to Resolve Them. The 25 problems identified in the guide are common across the country and in all types of nursing homes. The guide gives residents, family members, friends, and other advocates the tools they need to identify and solve the problems residents most frequently face. 

They also hosted a webinar focused on the 10 most common problems & how to solve them.

Consumer Voice has a tip sheet summarizing steps to problem-solving in a nursing home.

Consumer Voice published a brief tip sheet describing steps to advocating for better care in nursing homes, which is also useful for other types of care.   

Medicare has published a guide to living in a nursing home that discusses consumer rights and protections that must be implemented in all nursing homes that accept federal Medicare funds. 

Justice in Aging announces: The Supreme Court has affirmed that residents of public nursing facilities have the right to sue in federal court when their rights are violated. Read about the ruling and significant implications for other care settings in this statement.

The Center for Medicare Advocacy issued a report on the truth about nursing home “discharge” determinations. (HINT: it’s not what you may be told by the facility. The truth is that when a SNF tells a beneficiary that he or she is “discharged,” at that point, Medicare has not yet made any determination about coverage and a resident cannot be evicted solely because Medicare will not pay for the stay.)

Audio and transcript of a NPR segment on involuntary discharge or “nursing home evictions” illustrate this issue.

Here is a summary of the federal rules about discharge from a nursing home.

The Office of the Inspector General of the US (OIG) has released two reports identifying problems with eviction practices in nursing homes.

• Concerns Remain About Safeguards To Protect Residents During Facility-Initiated Discharges From Nursing Homes, evaluates how and whether nursing facilities comply with federal eviction protections.
• Nursing Home Residents with Endangering Behaviors and Mental Health Disorders May Be Vulnerable to Facility-Initiated Discharges, examines the reasons nursing facilities cite to justify eviction.

Justice in Aging has published resources and a toolkit to help families fight improper evictions from nursing homes and other issues.  Scroll about halfway down the page to access the toolkit.

LTCCC has published a fact sheet detailing protections for residents and families confronted with a “threat” of discharge, and how they can advocate for the rights of the resident.

Consumer Voice has produced a fact sheet delineating resident discharge rights, procedures to appeal, and resources to help. 

The South Carolina Oral Health Coalition’s Older Adult Work Group, in collaboration with the James B. Edwards College of Dental Medicine at the Medical University of South Carolina, has developed and distributed a free training curriculum in oral health care competency for certified nursing assistants and other caregivers for those who need assistance with oral care. Oral health is essential for overall health, and especially so for those who are frail and at risk for nutritional deficits. 

The “improvement standard” can no longer be cited as a reason to discontinue Medicare payment for therapies or other skilled services, as this fact sheet from Center for Medicare Advocacy sheet explains.

Center for Medicare Advocacy has crafted resources advocates can use to educate providers, contractors, and adjudicators who are not versed in the federal court decision Jimmo v Sebelius, which made the so-called “improvement standard” invalid in determining the appropriateness of physical, occupational, speech, and other special therapies. Believe it or not, more than ten years after the court ruling and despite numerous communications from CMS, many providers are STILL not complying with this requirement!

 Some Medicare Advantage plan managers / insurance companies assert that they only cover skilled therapy services when improvement occurs. This memo from CMS specifically instructs Medicare Advantage Organizations that they, too, must adhere to the provisions of the Jimmo settlement. 

CMS has consolidated onto one web page the materials related to the provision of skilled nursing and therapy services resulting from the Jimmo Settlement of January 2013 (which clarified that Medicare will pay for skilled nursing and therapy services regardless of anticipated improvement in the underlying condition), making access much more user-friendly.

The Center for Medicare Advocacy has issued a checklist to help patients when the so-called (and illegal) “improvement standard” is used to deny Medicare payment for skilled nursing and therapy care.

The Center for Medicare Advocacy has new resources on navigating the “no improvement required” provision of the federal court case Jimmo V. Sebelius when patients and advocates encounter problems or barriers by providers of therapies.

An important distinction regarding Medicare payment for therapy services is often omitted or misunderstood by providers of therapy. THERE ARE NO THERAPY “CAPS” for Medicare payment! HOWEVER, there are “thresholds” beyond which a statement of medical necessity and a review of documentation may be required. This description explains the dollar figure for the thresholds and the requirements triggered by those thresholds. See the section titled “Implementation of the Bipartisan Budget Act of 2018”.

The Center for Medicare Advocacy has updated its Fact Sheet on Medicare coverage of skilled nursing home care under the Jimmo court ruling.

The new payment models by which Medicare began paying for therapies beginning January 1, 2020, has already also resulted in home health consumers not receiving prescribed care. The Center for Medicare Advocacy has published a case-study-based guide for consumers to respond to provider misinterpretations of the new rule.

Find Your State’s Long-term Care Ombudsman office.

The National Consumer Voice for Quality Long-Term Care has several resources that include important information about abuse prevention, abuse reporting, and protection of individual rights. 

And this guide defining abuse, neglect, and misappropriation of property.

Resources from Consumer Voice to help advocates recognize, prevent, and reportabuse, neglect, and exploitation of loved ones in long-term care, including fact sheets, webinars, interactive Prezi training modules, and others, covering a large range of topics:

· Elder Abuse

· Abuse & Neglect

· Exploitation & Misappropriation of Property

· Put a STOP to Poor Care

· Sexual Abuse

· Resident-to-Resident Mistreatment

· Financial Exploitation

· Surveillance & Electronic Monitoring

· Privacy

These same resources and others are available at the National Ombudsman Resource Center (NORC) as well, for advocates and Ombudsman staff.

The National Center on Elder Abuse (NCEA) has created a Training Resources on Elder Abuse (TREA) website. TREA is a searchable database designed to support professionals, caregivers, and the community with valuable training resources. 

They also offer this fact sheet on how to identify abuse and how to get help, co-produced with the National Consumer Voice for Quality Long-Term Care. 

LTCCC shares this quick reference defining abuse, neglect, exploitation, and the requirements for nursing homes to protect residents.

LTCCC has also published a report defining abuse and neglect, describing federal regulations in place to protect residents, and discussing promising practices that can be adopted by facilities to address these issues.

• from the University of Southern California
• from the Center of Excellence on Elder Abuse and Prevention 

A South Carolina dementia care professional discusses raising awareness of elder abuse.

Consumer Voice offers a number of fact sheets related to financial abuse and exploitationin various residential settings. 

Resident-on-Resident Aggression (sometimes called abuse) is often cited as a reason to discharge an “aggressive” resident. The National Center on Elder Abuse has a guide to successfully addressing these behaviors, and avoiding the threat of involuntary discharge of the “aggressive” resident.

National Consumer Voice for Quality Long-Term Care has many resources, including:

• a consumer education campaign on the misuse of medications to control behavioral “problems”, often at the expense of the well-being and even the lives of consumers
• a campaign to empower consumers and advocates to speak out against the overuse and misuse of antipsychotic and psychotropic medications: “Avoiding Drugs as Chemical Restraints: Changing the Culture of Care”
• an essential guide for anyone faced with the age-old complaint (or threat) from a facility that their loved one is “difficult” to advocate for them when a facility is pushing for them to be placed on psychotropic drugs.
• public policy resolutions, presented to Congress, on the serious problem of over-prescribing of antipsychotic medications in nursing homes:
• Requesting Department of Health and Human Services intervention 
• Ending the practice of consulting pharmacists for nursing homes also being affiliated with long-term care provider pharmacies or drug companies  

Center for Medicare Advocacy also has numerous resources: 

• 3-part series on inappropriate use of antipsychotic drugsin nursing facilities:
• Part One 
• Part Two 
• Part Three 
• a report on the effectiveness of the partnership between CMS and the nursing home industry in reducing the overuse of antipsychotic drugs, which states, among many interesting facts, that “more than 200,000 residents who should not be taking these drugs continue to take them.”
• a report on overuse of antipsychotic medications in nursing homes

Human Rights Watch has published the following on this issue:

• an in-depth study of the overuse of antipsychotic medications in nursing homes, including its impact on the lives of residents
• a guide about nursing facility residents’ rights concerning medication in easy-to-read formats, available as an electronic or print leaflet and as a video

The federal General Accounting Office report summary on the use of psychotropic medications in the elderly in various settings here and the full report here.

The US Office of the Inspector General (OIG) has issued a report revealing an alarming increase in the use of psychotropic drugs, with potentially fraudulent schizophrenia diagnoses increasing by 194% between 2015 – 2019. 

The NY LTCCC has a page containing many resources on the topic of psychotropic drug use/misuse in nursing homes.

The NY LTCCC offers an advocacy toolkit for addressing inappropriate use of antipsychotic drugs on people with dementia.

Justice in Aging has issued a brief focused on the overprescribing of psychotropic medications and advocating for reforms and outlining shortcomingsin provider practices which deceive consumers and, in some cases, violate laws.

A cooperative effort among multiple agencies including CMS has developed a guide for physicians and other practitioners to avoid the inappropriate use of antipsychotic medicationsfor those in community settings, which consumers can use to advocate for proper treatment for their loved one.

Article describing the extent of the problem of overuse of antipsychotic drugs in nursing home residents published in 2011 is still, sadly, relevant today.

If this article doesn’t convince you of the benefits of person-centered care vs. anti-psychotic medications, we don’t know what will!

All that having been said, consumers in long-term care CAN have legitimate mental health and substance use diagnoses and the associated challenges. The Center of Excellence for Behavioral Health in Nursing Facilities, established by the Substance Abuse and Mental Health Services Administration (SAMHSA), in partnership with the Centers for Medicare and Medicaid Services (CMS), consults with nursing homes experiencing challenges with consumers’ mental health and substance use issues and provides a multitude of resources for facilities and caregivers, which families and advocates can also access.

The Office of the Inspector General of the United States has issued a report about the incidence of adverse events in nursing homes. Although 9 years old, sadly, conditions are not improving, and this report is still relevant.

The Center for Medicare and Medicaid Services CMS) has a resource page addressing adverse events, and has released a “Change Package” resource of best practices to prevent harm from all causes in nursing homes. 

 National organizations of both for-profit and not-for-profit providers of long-term care have launched an all-out campaign championing proposed legislation that would prevent ANY federal requirement for a minimum of on-duty staff in nursing homes from EVER being implemented, EVER.  Members of both chambers of Congress have challenged these organizations for their assertions in this letter, calling their campaign a “shameless attempt to sabotage” the long-overdue rule. 

Read a personal story about the dangers of misdiagnosis and how that puts a life at risk when medical professionals stop looking for answers. 

This fact sheet on surveillance cameras in rooms of nursing home residents, dated 2020, is still current as of 2022. 

The Office of the Inspector General of the US has issued a report on the performance of nursing homes in investigating complaints 2011-2015.  The information is still applicable today.

In a reversal of the April 7, 2022, announcement ending its pandemic-era waiver allowing untrained staff to provide care for residents of nursing facilities, on August 29, 2022, CMS reinstated this waiver for 15 states that claim hardships in meeting the training and certification requirements for their staff. Consumer Voice has issued a statement in strong opposition to this reversal, and a call to action for advocates in those states. 

Consumer Voice has published a new report, The Impact of Understaffing on the Daily Lives of Nursing Home Residents. The report highlights the experiences of residents – 88% of whom reported insufficient staff to meet their needs.

Senate Special Committee on Aging, led by Chairman Bob Casey, released a new report, “Uninspected and Neglected: Nursing Home Agencies are Severely Understaffed, Putting Residents at Risk.”  The report details a nationwide staffing crisis at state survey agencies that is directly impacting the health and well-being of nursing home residents. On May 18, 2023, the Senate Special Committee on Aging held a hearing on the issue.

The Long-Term Care Community Coalition (LTCCC) publishes numerous reports exposing various issues in long-term care that place consumers at risk:  

• Elder Justice newsletters discussing the true impact of so-called “no-harm” deficiencies, providing real-life examples
• Alarming report illustrating further the failure of nursing homes to provide even basic quality of care
• Report detailing the federal and state requirements for training of Certified Nursing Assistants (CNAs) and providing comparisons between the two for each state
• a report on nursing home ownership which identifies promising practices among states for evaluating nursing home owners for state licensure and provides essential principles for improving accountability and integrity in the licensure process. This media alert includes a link for advocates to urge their lawmakers to support these measures.  

This New York Times article from January 2018 illustrates a growing trend in a get-rich scheme in which owners of nursing homes also have ownership interest in numerous support services companies (therapy, meal service, etc.) with whom they contract – and overpay – for these support services, thereby reaping large profits while underfunding the nursing homes.

 Read a letter from the National Consumer Voice for Quality Long-Term Care to the Department of Justice, Department of Health and Human Services, and the Federal Trade Commission regarding corporate greed in nursing home care. 

This article from JustCare warns that “chain” (i.e. corporate-owned multi-location) nursing homes may not mean quality. 

Consumer Voice has published this reference guide to help advocates untangle the web of corporate ownership which enables hiding assets and profits while claiming to be “losing money”.

The profit motive has even struck in the “market” of “treating” people with dementia in nursing homes.

Private Equity Stakeholder Project has published a study focused on the concerns that private corporate ownership of nursing homes raises on many levels.

This article from The Conversation offers a good description of how the for-profit world is worsening care in nursing homes while reaping increasing profits.

 LTCCC has released a new statistical report revealing data on the prevalence of poor-performing nursing homes in each state. The data include a break-out of the prevalence in for-profit, non-profit, and government ownership. 

Consumer Voice has released a new report which documents how each year nursing homes funnel billions of dollars through related party companies (companies they own) with little to no oversight by the Centers for Medicare & Medicaid Services (CMS). The report provides a detailed look at related parties and how nursing homes potentially use them to hide how much money they are making and to give the illusion that their facilities are not profitable. “Where Do the Billions of Dollars Go? A Look At Nursing Home Related Party Transactions,”

A webinar discussing this report is available here; click on webinar title “Dignity for All: Increase Scrutiny of Nursing Home Finances” for this informative presentation.