Once a loved one is receiving long-term care, in any setting, keeping high quality is an ongoing challenge. The following resources may help when tackling a wide range of issues that may arise. While they cannot address all the possible challenges that may present themselves, these resources deal with a large number of issues that commonly occur in long-term care in a variety of settings. We provide these linked resources to help families become strong advocates, not only for their own family members, but also for initiating system-wide changes in the long-term care arena, whether care takes place in a facility or in the home.
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.
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.
Justice in Aging has published a toolkit to help families fight improper evictions from nursing homes. Scroll about halfway down the page to access the toolkit.
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 caregiversfor 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!
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.
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.
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
These same resources and others are available at the National Ombudsman Resource Center (NORC) as well, for advocates and Ombudsman staff.
LTCCC shares this quick reference defining abuse, neglect, exploitation, and the requirements for nursing homes to protect residents.
The 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.
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:
Center for Medicare Advocacyalso has numerous resources:
Human Rights Watch has published the following on this issue:
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 Stateshas 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.
Read a personal story about the dangers of misdiagnosisand 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.
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:
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.
This article from JustCare warns that “chain” (i.e. corporate-owned multi-location) nursing homes may not mean quality.
The profit motive has even struck in the “market” of “treating” people with dementiain 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:
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.