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Protecting Medicaid, Americans' Only Long-Term Care Safety Net

The Medicaid program was established by the Social Security Amendments of 1965 and plays a critical role in providing long-term services and supports in our nation. Click on the links below to learn more about the role Medicaid plays in long-term care:

Nursing home resident and consumer advocate Brian Capshaw on Why Medicaid Matters:

 

Consumer Voice Leadership Council member and nursing home resident Robin Guy on why Medicaid is important to her:

News and Updates


Congress and President Trump face the difficult challenge of coming to agreement on a balanced approach to reducing our nation's deficit. Undoubtedly, tough budgetary decisions will have to be made in the future to resolve the fiscal issues our nation is facing, but one thing is certain: we cannot allow any budgetary agreement to harm long-term care consumers' access to needed services! 

We must ensure that strong federal funding and the traditional structure of the Medicaid program -  the largest single payer of long-term care in our nation - is preserved in any proposed budgetary deal. Implementing large-scale funding reductions to Medicaid would harm consumers' access to long-term care and the quality of care that consumers receive in nursing homes and other long-term care facilities. Check back with us for updates!

  • The US House of Representatives has just issued a proposal to change the Medicaid program by going to a system of per capita caps.  The proposal is part of a bill, H.R. 277, to replace the Affordable Care Act.  These changes to Medicaid would be devastating to nursing home residents and other long-term care consumers.

Per Capita Caps

Per capita caps give states a fixed amount of money for each Medicaid beneficiary. The amount doesn’t change over time, so the result is a massive cut in Medicaid funding.  For long-term care consumers, this means:

  • Fewer people would receive nursing home care even if they needed it.
  • States are likely to eliminate coverage they are not required by the federal government to furnish – such as bed hold coverage for hospitalization and therapeutic leave.
  • Eligbility standards would be tightened making it harder to get into a nursing home or receive and home and community-based services.
  • The personal needs allowance for nursing home residents could be slashed to the federally required minimum of $30 per month, leaving residents with even less money for items like clothing or hair cuts.
  • Nursing home quality of care would decline because nursing homes would cut staff and there would be fewer nursing home inspectors (surveyors).

Take Action!


Urge Congress to preserve Medicaid by rejecting any budgetary proposals that would harm the traditional structure of Medicaid or reduce federal funding for the Medicaid program!  Read Consumer Voice's fact sheet on the dangers of Medicaid per capita caps.

  • Click here to send an editable message to your Member(s) of Congress!
  • Call Congress to advocate for protecting Medicaid! Contact the U.S. Capitol Switchboard at (202) 224-3121 and ask for your senators' and/or representative's office.
  • Urge your family, friends, and fellow advocates to do the same!  

Listen to Consumer Voice's Pep Rally Webinar on How to save Medicaid for Long-Term Care Consumers below.  Download the PowerPoint slides here.  Access our sample messages you can use when talking to legislators.

 

   Share Your Story


How is Medicaid important to you? Tell us your story!

  1. What to include in the story

We have prepared questions to answer yourself or to guide an interview with someone else.  There are questions for three settings:  a nursing home, an assisted living facility and at home.

Nursing home

At Home and Assisted living

  1. Formats to use and how to submit the story 

In writing. Email to info@theconsumervoice.org

Online using our online story form. Click here

Recording a video.  For instructions on how to share your video with us, click here.  

  1. Completing a consent form (required)

We must have a signed consent form in order to use your story.

If it is your own story, please fill out this form and email it to info@theconsumervoice.org 

If you’re telling someone else’s story, please have them fill out the form. You can then email it toinfo@theconsumervoice.org   

Read stories about consumers' and family members' experiences here.

 Medicaid: An Introduction


Medicaid is a national public health insurance program funded by both the federal government and states and operated at the state-level. Medicaid pays for health services and long-term care for low-income Americans, including the elderly and persons with disabilities. To qualify for Medicaid, individuals must meet certain income limits set in place by the federal government and by states, as well as other requirements.

Although Medicaid is operated at the state level, every state Medicaid program must comply with federal statute and cover certain mandatory services. However, states can choose additional services to include under their Medicaid programs.

Approximately 70 million Americans rely on the Medicaid program for the care, treatment and services they need, including long-term services and supports.

Why is Protecting Medicaid Important to Long-Term Care Consumers?


Medicaid Remains the Largest Single Payer of Long-Term Care in Our Nation: Medicaid is the primary payer of long-term services and supports, accountable for nearly half of all long-term care financing and covering nearly half of all nursing home expenditures. Sixteen million seniors and people with disabilities—1 out of every 4 people—rely upon Medicaid for their long-term care needs. Any funding reductions made to the Medicaid program would hurt these individuals. 

Medicaid is the Only Way Most People Can Afford Long-Term Care: Long-term care is extremely expensive. According to Genworth Financial, the average annual cost of nursing home care was $92,378 for a private room and $83,125 for a semi-private room. Few people can afford these rates for very long or at all.  If they don’t have enough money or run out of money, many individuals will turn to Medicaid for assistance. For these consumers, Medicaid is the only option for receiving the long-term care they need.

Medicaid Allows Long-Term Care Consumers to Stay in Their Homes: Medicaid helps nearly one out of three individuals stay out of nursing homes and receive the services and supports they need at home. It continues to play an important role in strengthening consumer access to home and community-based services through various grant programs and waiver options, such as the recently authorized Community First Choice option that grants states the ability to provide long-term services and supports to Medicaid beneficiaries with disabilities.

Medicaid Pays for Services Not Covered by Medicare and Private Insurance: Unlike Medicaid, Medicare and standard private insurance plans do not cover ongoing long-term services and supports such as helping someone to dress, bathe, walk, eat, take medications, prepare meals, do the laundry and shop for groceries. In fact, Medicare only pays for a very small amount of nursing home care – and does not pay for assisted living at all. Although there are a limited number of private long-term care insurance plans that do cover these services, fewer than 10% of older adults have purchased such policies.  

For these reasons, Medicaid remains the only coverage option for the majority of individuals that cannot afford to pay out-of-pocket for long-term care. Without the Medicaid program, many of these consumers would go without needed care, or the financial burden of providing care would be placed on family caregivers and loved ones.

Medicaid Helps to Ensure Safety and Quality in Our Nation's Nursing Homes: Medicaid establishes standards for nearly 16,000 nursing homes and requires annual inspections that help to protect some of our most vulnerable citizens. Nursing homes that want to begin or continue participating in the Medicaid program are required to meet certain regulations put in place by the Centers for Medicare and Medicaid Services (CMS), known as Requirements of Participation. These rules play an integral role in helping to protect and ensure quality of care and life for residents over the past twenty-five years, and nursing homes are normally inspected once every 9 to 15 months to ensure compliance with these regulations. 

Decreasing Medicaid funding would reduce inspections and quality assurance in nursing homes, increasing residents' susceptibility to neglect and abuse. Furthermore, reductions in federal funding for Medicaid would likely result in less staffing at long-term care facilities and even lower worker wages, both of which would undoubtedly compromise quality of care. 

Advocates Speak Out About Medicaid's Critical Role in Long-Term Care


Medicaid is crucial in funding many individuals' long-term care needs. The following stories from advocates in various states illustrate the importance of preserving Medicaid and the difference this integral program makes in the lives of long-term care consumers and their loved ones:

California: “My uncle is in a nursing home and Medicaid pays his bill. He was brain damaged at birth. He lived with my parents all of my life until my father died and eventually my mother couldn't care for him on her own. Now it is my privilege to be his family caregiver. My uncle can't walk or talk. He needs to be in the nursing home, but there is no way we could afford it if it wasn't paid for by Medicaid. As a family, we've done the best we can by him, but now Medicaid is his only option to get the care he needs. Please don't take that away from him.”

Vermont: “We already see providers cutting corners due to budget shortages, meaning below minimum staffing levels that result in residents not getting the care or attention that they need. This will explode as a problem if more cuts to their reimbursement come down the pike. We will see more pressure ulcers, more pain issues, more avoidable falls, waiting longer for help, etc...the list could go on forever. My concerns are too numerous to list.” 

Maryland: “As Co-Chair of a family council, we are keenly aware of the need for Medicaid funds to support care for nursing home residents. Almost 67% of residents in our facility receive Medicaid. Although there is extensive fundraising in the community to supplement the budget, without Medicaid, the level of care will decline drastically and impair the health and quality of life for these most vulnerable seniors.”

Pennsylvania: “In my nursing home, I see many residents who would not get basic needs such as food and housing if it were not for Medicaid. I am pretty certain that many of these people would be on the streets if not for Medicaid.”

Ohio: “Seniors and disabled people on Medicaid/Medicare are already at poverty level. Long-term care facilities already spend as little as possible on their residents. If Medicaid/Medicare and Social Security are reduced, the care for these people will only get worse. It's a tough fight getting facilities to pay for what the law says they should provide for these people now. Reducing benefits will make it harder to get good care for our long-term care residents."

Arizona: “As both a volunteer Long-Term Care Ombudsman and a Hospice Volunteer, I know firsthand how many individuals and families would be adversely affected by a reduction in Medicaid support. For many, their lives, and certainly their limited quality of life, literally depend on it. Many of them have lost their ability to express themselves, so I must add my voice to those that are speaking out on their behalf.”

Consumer Voice Resources


"Dangers to Long-Term Care Consumers," a policy briefing from Consumer Voice, reviewed how nursing home residents, other long-term care consumers and their families are facing very serious threats.  The briefing provided information on proposed changes to Medicaid that would impact both access to and quality of long-term care and a bill that would severely limit the ability of injured consumers and their families to hold nursing homes, assisted living facilities and other health care providers accountable.  Hear from experts on these issues and what YOU can do.  

Download the PowerPoint slides here.

Other Useful Resources & Links


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Preserving Access to Civil Justice for Long-Term Care

In the legal system, a tort is defined as a civil wrong against an individual or a violation of an individual’s rights for which some kind of compensation – or damages - may be obtained. In nursing home cases, the most common damages are noneconomic damages and punitive damages. Noneconomic damages are to compensate for pain and suffering, while punitive damages are designed to punish the person or entity that committed the wrong and stop further harm from occurring. 

News and Updates


(Mar. 1, 2017) The House of Representatives is considering legislation, H.R. 1215, which will significantly strip away an individual’s rights to justice through the courts in the event they are harmed or killed by a health care provider, including nursing homes, assisted living facilities, rehabilitation facilities, doctors, hospitals, pharmaceutical companies, and more.

Click here for an issue brief on how H.R. 1215 harms consumers.

H.R. 1215:

  • Caps non-economic damages (such as paralysis or trauma) to $250,000, which would be mandated in states even where such caps are unconstitutional.
  • Mandates a Statute of Limitations – the amount of time a person has to file a lawsuit – that is more restrictive than most state laws.
  • Prohibits patients from receiving the full award from a jury in a lump sum, instead allowing damages over $50,000 to be paid periodically, leaving patients vulnerable and without the necessary resources to access care.
  • Repeals state joint liability for economic and non-economic damages – taking away an individual’s ability to bring one lawsuit again each of the entities responsible for their injuries and having the fault apportioned among them. The result is that taxpayer-funded programs will end up paying for the patient’s ongoing care needs, rather than the entity that caused the injuries.
  • Interferes with an individual’s right to contract with their own attorneys, yet no similar limits are placed on the entity that committed the harm.
  • Provides immunity to any health care provider licensed to prescribe or dispense a prescription drug, even if it were negligently prescribed or administered.

This bill eliminates rights and protections from individuals who have been seriously injured or killed, while protecting nursing homes, assisted living facilities, hospitals, doctors, insurance companies, pharmaceutical companies, and other health care providers.   

Take Action!


(Mar. 1, 2017) Urge your Member(s) of Congress to oppose H.R. 1215 and any other legislation that would strip away consumers’ access to civil justice when they need it the most!

  • Click here to find your Member(s) of Congress or contact the U.S. Capitol Switchboard at (202)224-3121 and ask for your senators’ and/or representatives’ office.
  • Urge your family, friends, and fellow advocates to do the same!

   

What is Tort Reform?


Tort reform refers to efforts by state and federal legislatures to place limitations on the amount of damages that can be recovered by individuals in certain cases involving personal injury or the improper care or treatment of a patient by a health care provider. Several states have passed tort reform laws, and there are efforts to pass a national law to cap damages.  

Neglect and abuse occur far too often in the nursing home industry. According to a government study, nineteen states and the District of Columbia reported that over a quarter of their nursing home facilities received deficiency notices for harming their residents or placing their health in jeopardy in 2014. Civil suits are an important factor in helping to improve nursing home care by holding facilities accountable for the poor care, treatment and abuse of residents. Tort reform would limit the amount of damages nursing home residents - who are among the most frequent and vulnerable victims of abuse and neglect in health care institutions – could receive.

Why is Tort Reform Harmful to Long-Term Care Consumers?


Tort reform would harm long-term care consumers by:

Making long-term care facilities less accountable for harmful actions: Government studies have repeatedly shown that state inspection agencies fail to cite or penalize facilities for harming residents, even when they find serious injuries; moreover, many serious problems are never cited at all. According to a 2008 Government Accountability Office (GAO) report, more than nine states failed to cite instances of actual resident harm or instances that placed residents in immediate jeopardy in greater than 25% of long-term care facilities. Often the courts are the only branch of government that holds nursing homes accountable. By reducing damages, tort reform would lessen the degree of nursing home accountability. Less accountability could lead to more, not fewer, injuries.

Limiting consumer access to the civil justice system: Many residents who have been abused or neglected or their families do not file suit because they are unable to find attorneys willing to take their cases. Lawyers are increasingly unable to accept cases because the amount awarded for damages under tort reform will not offset the high cost of handling the lawsuit. As a result, individuals are left with no legal representation and are shut out of the civil justice system.  

Limiting compensation for long-term care consumers: Noneconomic damages are often the only compensation most nursing home and other long-term care facility residents receive. A recent study found that eighty percent of nursing home awards are for noneconomic damages for residents’ pain and suffering because most residents do not have earned income to replace. Noneconomic damages compensate residents for very real injuries–such as the loss of a limb due to a pressure ulcer, the loss of mobility due to a preventable fall, and severe pain and permanent impairment. They also compensate for the loss of a spouse or parent. These are very real damages and should not be subject to arbitrary limitations.

Protecting corporations, not consumers: Damages, particularly punitive damages, must be large enough to deter future poor care. Tort reform proposals protect the pocketbooks of health care providers, including multi-million dollar corporations operating nursing homes, by decreasing the amount of damages they are required to pay. According to a 2013 report, the U.S. nursing homes and long-term care facility industry have a combined annual revenue of about $225 billion. If corporate behavior is to change, the size of the damages must get the attention of the corporate boardroom; otherwise, corporations simply see the amount as the “cost of doing business.”

 

Real People, Real Harm


The cases below are examples of nursing home residents whose families  pursued legal action to hold facilities accountable for abuse and neglect. These cases illustrate the importance of preserving residents' rights and access to the civil justice system when they are harmed: 

Katherine J.

Albert S.

Herbert  H.

Margaret D.

Germaine M.

Consumer Voice Resources


"Dangers to Long-Term Care Consumers," a policy briefing from Consumer Voice, reviewed how nursing home residents, other long-term care consumers and their families are facing very serious threats.  The briefing provided information on proposed changes to Medicaid that would impact both access to and quality of long-term care and a bill that would severely limit the ability of injured consumers and their families to hold nursing homes, assisted living facilities and other health care providers accountable.  Hear from experts on these issues and what YOU can do.  

Download the PowerPoint slides here.

Other Useful Resources & Links


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Nursing Home Closures

Nursing home residents may suffer harm when their nursing home closes; it is important to identify ways to reduce or eliminate such harm. 


Webinars and Reports

When Nursing Homes Close: Learn the Federal Rules - Part 2 (December 2017)

This webinar presented information on the federal closure regulations, as well as the revised transfer/discharge nursing home regulations that apply to every closure.

Find PowerPoint slides here.

When Nursing Homes Close: What You Can Do - Part I (November 2017)

This webinar provided information about nursing home closures and advocacy strategies you can employ during a closure.  Presenters spoke about best practices, including how to minimize transfer trauma during a closure and the importance of a relocation team.

Find Powerpoint slides here.

 

Successful Transitions: Reducing the Negative Impact of Nursing Home Closures

A report released in November 2016 by Consumer Voice found that major obstacles to a successful transition include lack of appropriate and nearby placements or providers who do not want to take a specific resident; poor discharge planning; and lack of communication and time to find new placements for residents. These are serious barriers, but innovative strategies and practices in several states appear to have the potential to address these issues. The report discusses these practices and recommends actions that the Centers for Medicare and Medicaid Services (CMS), state agencies and State Long-Term Care Ombudsman Programs can take to better protect nursing home residents facing relocation.


Nursing Home Closures Toolkit

Nursing Home Closures Toolkit - This toolkit includes materials that will be helpful to you if you are involved in a nursing home closing.  The toolkit is intended for use by Ombudsmen and advocates.  It is available as a PDF here.


State-Specific Information

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Round-the-Clock RN Coverage: A Step towards Better Nursing Home Care


Background on 24-Hour RN Bills Introduced in Congress

On July 31, 2014, U.S. Representative Jan Schakowsky introduced the "Put a Registered Nursing in the Nursing Home Act." The bill would require all nursing homes receiving Medicare and/or Medicaid reimbursement to have a registered nurse (RN) on duty twenty-four hours per day, seven days a week. Although most people believe RNs are already required round-the-clock, this is not the case. Under current federal law, nursing homes are only required to have a RN eight hours each day regardless of facility size – no matter how many residents they have or how sick they are. To read Consumer Voice's full press release on this legislation, click here.

The 24 Hour RN Bill is an excellent opportunity for all long-term care advocates because after years of playing “defense,” it gives us an opportunity to go on the offense and expand recognition of what it takes to achieve quality care.

Here is a link to Rep. Schakowsky’s press release announcing the bill.

And here is a message from our Founder, Elma Holder, who worked to make the world understand that the nursing home resident should be the centerpiece of the nursing home experience and whose wishes as well as their human, civil, legal, and medical rights should be honored every minute of the day – and not just when a RN is on duty!

On February 12, 2015, Congresswoman Jan Schakowsky (D-IL) reintroduced legislation in the U.S. House of Representatives to require round-the-clock registered nurse (RN) coverage in nursing homes. H.R. 952, the Put a Registered Nurse in the Nursing Home Act, and would require all nursing homes receiving Medicare and/or Medicaid reimbursement to have a RN on duty twenty-four hours a day, seven days a week. Under current federal law, nursing homes are only required to have a RN eight hours a day regardless of facility size or the complexity of residents’ care needs. This is not sufficient to ensure that quality care is being provided within these settings. It is critical for a RN to be on duty 24 hours a day because she or he is the sole nursing professional in a nursing home who can conduct nursing assessment when residents’ medical conditions suddenly change or deteriorate.

What would H.R. 952, the Put a Registered Nurse in the Nursing Home Act, do?

This bill would require nursing facilities and skilled nursing facilities (“nursing homes”) that receive Medicare and/or Medicaid reimbursement to have a direct-care registered nurse (RN) on duty 24 hours per day, 7 days per week. Current law only requires facilities use an RN for 8 continuous hours each day regardless of facility size.  An RN must be on duty 24 hours a day because she or he is the sole nursing professional in a nursing home who can conduct nursing assessment. Per current federal regulation, nursing facilities are required to have an RN on-site in the building for only 8 consecutive hours each day.  Under current rules, that RN does not have to be a direct care nurse; that RN could work in an administrative capacity.

Why is this Legislation (OR why is 24 Hour RN Coverage) Important? 

Over the past two decades, the medical intensity and complexity of care for nursing home residents has increased dramatically. A resident who is elderly, frail, and has multiple complex conditions may be discharged from the hospital to the nursing home one to two days after surgery for a fractured hip. This requires expert nursing skills to anticipate, identify and respond to changes in condition, ensuring appropriate rehabilitation and maximizing the chances for a safe and timely discharge home. This high level of skill and knowledge for oversight and care is needed 24 hours a day, 7 days a week. RN coverage for only 8 hours a day leaves the residents vulnerable, undermining effective prevention of complications and possibly delaying important interventions. In addition, the absence of RN staffing for up to 16 hours each day means that there is no one present capable of assessing and responding when residents’ medical conditions suddenly change or deteriorate.

How do Registered Nurses (RNs) Help to Improve Nursing Home Care? 

Registered nurses are the only nursing personnel with the education and licensure to conduct head-to-toe physical assessments, interviews and record reviews in order to draw conclusions about nursing diagnoses, appropriate nursing interventions and care planning; to continuously monitor and evaluate interventions; and, finally, to lead the health care team in providing care for each resident. RNs are also the nursing home staff members who work directly with residents’ and other medical professionals to develop plans of care that promote the residents’ highest level of health and well-being. Higher RN levels result in lower antipsychotic use, fewer pressure ulcers, less restraint use and cognitive decline, fewer urinary tract infections and catheterizations, less weight loss and less decrease in function. Of particular relevance to today’s health care improvement initiatives is the decrease in unnecessary hospitalizations of nursing home residents—and research has shown that savings in hospitalizations pay for the increased RN time.


Resources for H.R. 952, the Put a Registered Nurse in the Nursing Home Act

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Revised Federal Nursing Home Regulations

Final Regulations


On October 4, 2016, the final regulations for nursing homes participating in the Medicare and/or Medicaid programs were published in the Federal Register.

Consumer Voice, along with Justice in Aging and the Center for Medicare Advocacy, created a brief overview of the regulations, including positive and negative effects for nursing home residents.

One of the most notable requirements included in the final regulations is the prohibition of pre-dispute arbitration clauses in nursing home contracts.  Read Consumer Voice's statement commending CMS on this requirement.  This portion of the revised rule has not gone into effect yet pending the outcome of the current lawsuit.  Now, CMS has issued new proposed rules that rescind resident protections against these unfair provisions.  In the proposed rule, CMS removes the requirement preventing facilities from entering into pre-dispute arbitration agreements, and also removes the provision banning facilities from requiring these agreements as a condition of admission.

Since shortly after the rules went into effect, efforts have been pursued by the nursing home industry and CMS to delay implementation of parts of the rule, or even to repeal certain provisions.  See a chart of proposed actions, and a letter signed by 23 national organizations, 217 state organizations, and more than 950 individuals opposing any efforts to revise, or delay implementation of, the nursing home requirements of participation.

On November 28, 2017, Phase 2 regulations went into effect, along with a new survey process, the "freezing" of health inspection ratings, and revised interpretive guidelines.  At the same time, an 18-month moratorium on full enforcement of certain Phase 2 requirements began.  See here for more information.  

Rule Resources


Consumer Voice prepared Part I of the Summary of Key Changes in the revised federal nursing home regulations related to Resident Rights; Abuse, Neglect, and Exploitation; and Admission, Transfer and Discharge Rights.  This summary provides an overview of key changes in these three sections that will go into effect in Phase 1 on November 28, 2016.

Consumer Voice also has prepared Part II of the Summary of Key Changes in the revised federal nursing home regulations for the sections on Resident Assessment (§483.20) – Training Requirements (§483.95).  It is designed to highlight what is different between the prior rule and the final rule and includes only those parts of the rule that went into effect in Phase 1 on November 28, 2016.

Summary of Key Changes in the Rule – Phase 2 - This summary sheet is designed to provide an overview of key changes in the revised federal nursing home regulations that went into effect November 28, 2017 as part of Phase 2.  The purpose of the summary is to highlight what is different (new or modified) between the prior rule and the final rule.

Consult Consumer Voice's Side-By-Side Comparison of Revised & Previous Federal Nursing Home Regulations for an in-depth look at all the provisions in the revised federal regulations.  The side-by-side classifies which provisions are revised, new, or exactly the same as the previous language.  If the provision is revised, the side-by-side lists the previous language from which it was revised.  In addition, the side-by-side denotes the implementation phase for each provision.

Consult Consumer Voice's Revised Interpetive Guidelines with a Clickable Table of Contents for easier navigation in CMS's Interpretive Guidelines.

Phase 1 of the revised regulations for nursing homes participating in Medicare and/or Medicaid programs will be implemented on November 28, 2016. A side-by-side chart includes references to the Ombudsman Program comparing the revised regulations and related language from the preamble to the current regulations. The chart shows which requirements are new and indicates whether the regulations are included in Phase 1 or 2 (Phase 2 must be implemented by November 28, 2017). For more information, visit NORC's website.

Presentations


Several presentations took a closer look at elements of the revised federal nursing home regulations.  View the following presentations here.

Issue Briefs


Consumer Voice, in partnership with Justice in Aging and the Center for Medicare Advocacy, is developing a series of briefs entitled "A Closer Look at the Revised Nursing Facility Regulations."  

  • Why the Recently-Revised Nursing Home Regulations are Vital for Nursing Home Residents - This fact sheet provides a quick overview of some of the important new provisions, so that stakeholders and policymakers can better understand the revised regulations’ important role in improving nursing facility care. The revised regulations provide many benefits to nursing facility residents, including an increased focus on addressing a resident’s needs and preferences. 
  • Assessments, Care Planning, and Discharge Planning - This brief provides an overview of the regulations in these areas and highlights provisions that can be useful in advocating for improved quality of care and quality of life.  For instance, the revised assessment process must now gather information about a resident's preferences, goals, and there is greater emphasis on the participation of the resident and resident’s representative participate in the care planning team.  Also, care planning must include planning for discharge, to give residents an increased ability to move out of the facility into the community. The brief gives information on effective dates, how to find the regulations, and concludes with practical tips for residents and advocates.
  • Unnecessary Drugs and Antipsychotic Medications - This brief outlines the recent changes in unnecessary drug regulations, including a discussion of a broader category of psychotropic drugs, along with new controls over “as needed” (PRN) psychotropic drugs. The revised regulations also expand requirements for drug regimen reviews.
  • Involuntary Transfer and Discharge - This brief explains the minor changes in transfer and discharge regulations, which include narrowing the facility’s ability to base a transfer/discharge on a supposed inability to meet the resident’s needs, by requiring increased documentation by the resident’s physician. The regulations also limit transfer/discharge for nonpayment.
  • Nursing Services - This brief explains the recent changes in nursing services regulations, which include placing a greater emphasis on establishing minimum comptencies and skill sets for all nursing personnel.  In addition, the regulations have increased requirements for in-service training of nursing personnel.
  • Admission - This brief explains the changes in admission, bedhold and return regulations, which include broadly prohibiting facilities from using admission agreements or other documents that waive a resident's rights.  The revised regulations also prohibit pre-dispute arbitration agreements, but this consumer protection is currently blocked by a court order.
  • Visitation Rights - This brief explains changes in visitation rights including the right to receive visitors, written policies and procedures and other facility requirements, notice requirements, and visitation privileges.
  • Rehabilitation Services - This brief covers how the substantive requirements for specialized rehabilitative services are largely unchanged from the prior version of the regulations, with the exception of "respiratory therapy," which is added to the list of services that a facility must provide to its residents who need them.
  • Return to Facility After Hospitalization - This brief explains bed hold rights when a resident returns to a facility after a hospitalization.  The brief provides information on advance notification of bed hold rights and residents' rights if they return to a facility after a bed hold period has been exceeded.
  • Grievances and Resident/Family Councils - This brief covers the resident's right to file grievances and the facility's requirement to work to resolve those concerns promptly.  Each facility must have a grievance policy and provide residents with information on how to file a grievance.  Also, residents have a right to form a resident council, and family members and resident representatives have the right to form a family council.  The facility must act upon council concerns and recommendations.
  • Quality of Care - The substantive requirements for quality of care are retained in the revised regulations and CMS has affirmed the regulations' goals of supporting person-centered care and enabling each resident to attain his or her highest level of well-being.  This brief covers those regulations as well as providing information on how the quality of care provisions have been reorganized in the revised regulations.
  • Oppose Weakening and Delay of Federal Nursing Home Rules - This brief provides an overview of the revised federal nursing home regulations, concerns, the importance of the regulations for consumers, and tips on what can be done to help consumers.

CMS Resources


  • The Centers for Medicare and Medicaid Services published a memo on the Revision to State Operations Manual (SOM) Appendix PP for Phase 2, F-Tag Revisions, and Related Issues.  It includes a Phase 2 Tag Crosswalk and revised Appendix PP.
  • CMS released an advance copy of revisions to the State Operations Manual (SOM), Appendix PP with the revised regulations and tags (see this memo for more details).
  • The Centers for Medicare and Medicaid Services published on-demand, online training related to the Phase 1 requirements available for providers on the CMS website. CMS developed online training for regional offices, state survey agencies, providers and other stakeholders on the new Nursing Home Regulations, including information about Phase 1 of the new regulations.  All Long Term Care surveyors are required to complete the training in order to be able to conduct any LTC surveys after November 28, 2016.  Read the memo from CMS here.

Implementation Timeframes


On October 4, 2016, the final regulations for nursing homes participating in the Medicare and/or Medicaid programs were published in the Federal Register. The regulations are effective on November 28, 2016 and will be implemented in three phases. The chart below shows the implementation timeframes. Additional details regarding the revised regulations will be posted in the coming months.

This summary provides an overview of key changes in the revised federal regulations related to Resident Rights; Abuse, Neglect, and Exploitation; and Admission, Transfer and Discharge Rights that will go into effect in Phase 1 on November 28, 2016.

Note: The regulations included in Phase 1 must be implemented by November 28, 2016, regulations included in Phase 2 must be implemented by November 28, 2017, and regulations included in Phase 3 must be implemented by November 28, 2019.

Regulatory section

Implementation deadline

§ 483.1 Basis and scope

This entire section will be implemented in Phase 1.

§ 483.5 Definitions

This entire section will be implemented in Phase 1.

§ 483.10 Resident rights

The section will be implemented in Phase 1 with the following exception:

(g)(4)(ii)–(v) Providing contact information for State and local advocacy organizations, Medicare and Medicaid eligibility information, Aging and Disability Resources Center and Medicaid Fraud Control Unit—Implemented in Phase 2.

§ 483.12 Freedom from abuse, neglect, and exploitation

This section will be implemented in Phase 1 with the following exceptions:

(b)(4) Coordination with QAPI Plan—Implemented in Phase 3.

(b)(5) Reporting crimes/1150B—Implemented in Phase 2.

§ 483.15 Admission, transfer, and discharge rights

This section will be implemented in Phase 1 with the following exceptions:

(c)(2) Transfer/Discharge Documentation—Implemented in Phase 2.

§ 483.20 Resident assessment

This entire section will be implemented in Phase 1.

§ 483.21 Comprehensive person-centered care planning

This section will be implemented in Phase 1 with the following exceptions:

(a) Baseline care plan—Implemented in Phase 2.

(b)(3)(iii) Trauma informed care—Implemented in Phase 3.

§ 483.24 Quality of life

This entire section will be implemented in Phase 1.

§ 483.25 Quality of care

This section will be implemented in Phase 1 with the following exception:

(m) Trauma-informed care—Implemented in Phase 3.

§ 483.30 Physician services

This entire section will be implemented in Phase 1.

§ 483.35 Nursing services

This section will be implemented in Phase 1 with the following exception:

Specific usage of the Facility Assessment at § 483.70(e) in the determination of sufficient number and competencies for staff— Implemented in Phase 2.

§ 483.40 Behavioral health services

This section will be implemented in Phase 2 with the following exceptions:

(a)(1) As related to residents with a history of trauma and/or post-traumatic stress disorder—Implemented in Phase 3.

(b)(1), (b)(2), and (d) Comprehensive assessment and medically related social services—Implemented in Phase 1.

§ 483.45 Pharmacy services

This section will be implemented in Phase 1 with the following exceptions:

(c)(2) Medical chart review—Implemented in Phase 2.

(e) Psychotropic drugs—Implemented in Phase 2.

§ 483.50 Laboratory, radiology, and other diagnostic services

This entire section will be implemented in Phase 1.

§ 483.55 Dental services

This section will be implemented in Phase 1 with the following exceptions:

 • (a)(3) and (a)(5) Loss or damage of dentures and policy for referral—Implemented in Phase 2.

(b)(3) and (b)(4) Referral for dental services regarding loss or damaged dentures—Implemented in Phase 2.

§ 483.60 Food and nutrition services

This section will be implemented in Phase 1 with the following exceptions:

(a) As linked to Facility Assessment at § 483.70(e)—Implemented in Phase 2.

(a)(1)(iv) Dietitians hired or contracted with prior to effective date—Built in implementation date of 5 years following effective date of the final rule.

(a)(2)(i) Director of food & nutrition services designated to serve prior to effective—Built in implementation date of 5 years following the effective date of the final rule.

(a)(2)(i) Dietitians designated to after the effective date—Built in implementation date of 1 year following the effective date of the final rule.

§ 483.65 Specialized rehabilitative services

This entire section will be implemented in Phase 1.

§ 483.70 Administration

This section will be implemented in Phase 1 with the following exceptions:

(d)(3) Governing body responsibility of QAPI program—Implemented in Phase 3.

 • (e) Facility assessment—Implemented in Phase 2.

§ 483.75 Quality assurance and performance improvement

This section will be implemented in Phase 3 with the following exceptions:

(a)(2) Initial QAPI Plan must be provided to State Agency Surveyor at annual survey—Implemented in Phase 2.

(g)(1) QAA committee—All requirements of this section will be implemented in Phase 1 with the exception of subparagraph (iv), the addition of the ICPO, which will be implemented in Phase 3.

(h) Disclosure of information—Implemented in Phase 1.

(i) Sanctions—Implemented in Phase 1.

§ 483.80 Infection control

This section will be implemented in Phase 1 with the following exceptions:

(a) As linked to Facility Assessment at § 483.70(e)—Implemented in Phase 2.

(a)(3) Antibiotic stewardship—Implemented in Phase 2.

(b) Infection preventionist (IP)—Implemented in Phase 3.

(c) IP participation on QAA committee—Implemented in Phase 3.

§ 483.85 Compliance and ethics program

This entire section will be implemented in Phase 3. 

§ 483.90 Physical environment

This section will be implemented in Phase 1 with the following exceptions:

(f)(1) Call system from each resident’s bedside—Implemented in Phase 3.

(h)(5) Policies regarding smoking—Implemented in Phase 2.

§ 483.95 Training requirements

This entire section will be implemented in Phase 3 with the following exceptions:

(c) Abuse, neglect, and exploitation training—Implemented in Phase 1.

(g)(1) Regarding in-service training, (g)(2) dementia management & abuse prevention training, (g)(4) care of the cognitively impaired—Implemented in Phase 1.

(h) Training of feeding assistants—Implemented in Phase 1.

Proposed Regulations


The Centers for Medicare and Medicaid Services (CMS) has officially published its proposed revisions to the current regulations (also known as the Requirements of Participation) for nursing homes participating in the Medicare and/or Medicaid programs. This proposed rule is available to view in full at the Federal Register website here

As you may recall, CMS announced that it would be revising the Requirements of Participation for nursing homes in 2012; at that time, Consumer Voice, other advocates, and stakeholders submitted detailed recommendations to the agency on ways the current rules could be updated and strengthened (click here to see recommendations made by Consumer Voice in 2012 and here to view additional recommendations submitted in 2014.).

Consumer Voice has developed a comparison of the proposed and current regulations. To view this side-by-side comparison in PDF format, click here. The side-by-side in Excel format can be accessed here.

In addition, the non-profit, citizen advocacy group Public Citizen has put together a petition individuals can sign asking CMS to ban forced, pre-dispute arbitration in nursing home contracts as part of the proposed revisions to the nursing home regulations. Click here to sign their petition and here to learn more about this issue. 

The Requirements of Participation set critical standards for the quality of life and quality of care for nursing home residents. CMS must receive feedback from advocates like yourselves on the proposed revisions to ensure that any changes to the existing regulations would benefit, and not harm, residents.

HCBS Settings Final Rule

On January 10, 2014 the Centers for Medicare and Medicaid Services (CMS) issued the Medicaid Home and Community-Based Services (HCBS) settings final rule (CMS-2249-P2). The final regulation addresses several sections of Medicaid law under which states may use federal Medicaid funds to pay for HCBS. The rule establishes requirements for the qualities of settings that are eligible for reimbursement for Medicaid HCBS provided under sections 1915(c), 1915(i), and 1915(k).

Strengthening the Older Americans Act's Long-Term Care Ombudsman Provisions

This page contains resources and information on strengthening the Long-Term Care Ombudsman Program provisions in the Older Americans Act. Click on the topic areas below to find more information.

News and Updates


The U.S. Senate has unanimously approved a bill to reauthorize the Older Americans Act!  House-amended S. 192, the Older Americans Act Reauthorization Act of 2015, was signed by President Obama.  Reauthorization of the bill is long overdue; authorization expired in 2011.  S.192 Older Americans Act (OAA) bill includes provisions that would make the long-term care ombudsman program more effective and help long-term care consumers.  The bill will reauthorize the current OAA, which expired in 2011.

Click here to read the bill, S.192, OAA Reauthorization Act of 2016.

Click here to compare the House bill with the Ombudsman provisions of the current Older Americans Act. 

Click here to read the letter Consumer Voice submitted in support of the bill.

More information about the bill:
House S. 192 includes provisions clarifying both organizational and individual conflicts of interest within the Long-Term Care Ombudsman Program; improving resident access to ombudsmen; better protecting the confidentiality of ombudsman information; ensuring that State Ombudsmen receive ongoing training; and, permitting ombudsmen, when feasible, to continue to serve residents transitioning from a long-term care facility to a home care setting.

What the House bill includes: The main difference between the Senate version and the House bill is that the House bill includes specific authorization levels for funding that in general would increase 6.777 percent over three years and changes to the Senior Community Service Employment Program (SCSEP) program.

S. 192 will:

  • Clarify both organizational and individual conflicts of interest within the program;
  • Clarify that the State Ombudsman is responsible for the management of the Office of the State Long-Term Care Ombudsman, including the office’s fiscal management;
  • Improve resident access to ombudsmen;
  • Better protect the confidentiality of ombudsman information;
  • Ensure that State Ombudsmen receive ongoing training;
  • Grant long-term care ombudsman programs the option of continuing to provide assistance and services to individuals transitioning out of facilities and into home settings when feasible; and
  • Requires the State Long-Term Care Ombudsman and any designated local Ombudsman entity to identify, investigate, and resolve complaints of any residents of a long-term care facility, including residents with limited or no decision-making capacity and who have no known legal representative.

What is the Long-Term Care Ombudsman Program?


Under the Older Americans Act, every state is required to have a Long-Term Care Ombudsman Program that addresses complaints and advocates for improvements in the long-term care system.

Long-term care ombudsmen are advocates for residents of nursing homes, board and care homes and assisted living facilities. Ombudsmen provide information about how to find a facility and what to do to get quality care. They are trained to resolve problems. Ombudsmen can assist with resident complaints. However, unless given permission to share resident concerns, these matters are kept confidential. 

The ombudsman program is administered by the Administration on Aging (AoA).  The network has 8,700 volunteers certified to handle complaints and more than 1,300 paid staff. Most state ombudsman programs are housed in their State Unit on Aging.  Nationally, in 2008 the ombudsman program investigated over 271,000 complaints made by 182,506 individuals and provided information on long-term care to another 327,000 people.

Visit the AoA website for more information.

What Does the Long-Term Care Ombudsman Do?


  • Resolves complaints made by or for residents of long-term care facilities

  • Educates consumers and long-term care providers about residents' rights and good care practices

  • Promotes community involvement through volunteer opportunities

  • Recommends changes to laws, regulations and policies as appropriate and in accordance with federal law

  • Provides information to the public on nursing homes and other long-term care facilities and services, residents' rights and legislative and policy issues

  • Advocates for residents' rights and quality care in nursing homes, personal care, residential care and other long-term care facilities

  • Promotes the development of citizen organizations, family councils and resident councils

How Will Stronger Ombudsman Provisions Help Long-Term Care Consumers?


Stronger ombudsman program provisions would better protect the frail, vulnerable elders who depend on them. The provisions should be strengthened to: 

  • Give Ombudsmen Greater Freedom to Represent the Interests of Residents: Currently, many ombudsmen are restricted from taking systemic advocacy actions, such as communicating with legislators, policymakers or the media, either at all or without prior approval from the agency in which they are housed. New provisions would make it clearer that ombudsmen have this authority and increase their autonomy.

  • Improve Ombudsman Access to Residents: Ombudsmen face challenges gaining access to residents and finding a place to communicate privately with a resident. New provisions would give ombudsmen unimpeded, private access round-the-clock.

  • Reduce Conflicts of Interest: Ombudsmen may have other job responsibilities or be located in agencies that have responsibilities that can appear to or actually compete with the interests of residents.  As a result, residents and families may feel the ombudsman is not truly working on their behalf.  New provisions would give clarity regarding potential conflicts of interest and guidance for eliminating or remedying conflicts. 

Resources from Consumer Voice and the National Long-Term Care Ombudsman Resource Center


Other Useful Resourcs & Links


Forced Arbitration Agreements in Long-Term Care Facility Admission Contracts

This page contains information on forced pre-dispute arbitration agreements and the dangers they pose to long-term care consumers. Click on the topic areas below to find more information.

News and Updates


Senator Al Franken (D-MN) and Representative Henry. C “Hank” Johnson, Jr.  (D-GA) re-introduced the Arbitration Fairness Act (S. 878; H.R. 1844) in the 115th Congress. This important legislation would protect consumers by barring the use of any mandatory pre-dispute arbitration agreements, including the use of these agreements in long-term care facility admission contracts.

In the 112th Congress, Congresswoman Linda Sanchez introduced the Fairness in Nursing Home Arbitration Act, which would have ensured residents or their representatives could voluntarily choose arbitration after a dispute arose. The bill would have amended the Federal Arbitration Act to eliminate binding mandatory pre-dispute arbitration agreements in nursing home and other long-term care facility contracts and has not been re-introduced in the current 114th Congress.

In addition, CMS banned pre-dispute arbitration clauses in nursing home admission contracts in the revised federal nursing home regulations.  This portion of the revised rule has not gone into effect yet pending the outcome of the current lawsuit.  Now, CMS has issued new proposed rules that rescind resident protections against these unfair provisions.  In the proposed rule, CMS removes the requirement preventing facilities from entering into pre-dispute arbitration agreements, and also removes the provision banning facilities from requiring these agreements as a condition of admission.

Take Action!


Urge Congress to Bar Pre-Dispute Arbitration Agreements in Long-Term Care Contracts! Ask Congress to re-introduce the Fairness in Nursing Home Arbitration Act, or urge your legislators to support the Arbitration Fairness Act.

  • Click here to find your Member(s) of Congress!

  • Call Congress to advocate for eliminating these agreements in nursing home contracts! Contact the U.S. Capitol Switchboard at (202)224-3121 and ask for your senators' and/or representative's office.

  • Urge your family, friends, and fellow advocates to do the same!     

What is Pre-Dispute Arbitration?


Arbitration is process in which a dispute is settled using a process in which one or more arbitrators decides the outcome instead of a jury made up of members of the community. “Pre-dispute” arbitration means that the consumer must agree to arbitration before any dispute arises. 

Pre-dispute arbitration agreements are increasingly included in nursing home and other long-term care facility admission contracts that consumers or their families must sign in order for the consumer to be admitted as a resident. Once signed, these agreements bar consumers from seeking legal action in court should they suffer harm or injury while residing in the facility.

Many advocates have challenged the right of facilities to include pre-dispute arbitration agreements within admission contracts. However, on February 21st, 2012, the Supreme Court issued a decision in the case of Marmet Health Care Center v. Brown et al. that allowed for the enforcement of pre-dispute arbitration clauses.In its February decision, the Supreme Court ruled that these clauses were not barred by the Federal Arbitration Act and therefore could be included in consumer contracts. 

Why is Prohibiting Forced Pre-Dispute Arbitration Agreements Important to Long-Term Care Consumers? 


Forced pre-dispute arbitration agreements:

  • Place consumers at a disadvantage during the admissions process: Nursing home admissions are usually unplanned and often happen when individuals and their families are under pressure to enter into facility care as quickly as possible. Pre-dispute arbitration agreements are generally offered on a ‘take it or leave it’ basis by facilities. Consumers  may be forced into signing an arbitration agreement  because “leaving it” and trying to find another place right then and there is not an option. Arbitration agreements can often be buried within the fine print of admission contracts and may go unnoticed by many consumers given the huge amount of paperwork that must be signed during the admissions process.

  • Strip consumers of their constitutional right to a trial by jury: When consumers sign an arbitration agreement, they sign away forever their constitutional right to a trial by jury. Such a decision should be given careful consideration. However, individuals and their families are pressured into signing blanket arbitration agreements in advance, without having any idea what they might be arbitrating and with only the information the facility chooses to give them about what arbitration is about. No one can make an informed decision under such circumstances! 

  • Deny consumers the benefits and advantages of a court of law:  Arbitrators are private individuals who may be chosen by the nursing home - not publicly elected or appointed officials, like judges. Arbitration can be very costly and is usually far more expensive than court. Residents and families not only have to hire a lawyer, but also generally have to pay a part of the arbitrator's fee. This is like paying the judge - which consumers don't have to do in court! Due to the cost, arbitration may not be possible for many residents and families - leaving them with no legal recourse. And once a decision is issued, consumers typically cannot appeal it as they can in the court system.

  • Place consumers at increased risk: According to a GAO report, eighteen states cited more than 20 percent of their nursing homes for harming residents or placing them at risk; 12 states cited at least a quarter of their facilities for dangerous conditions or actual harm. As alarming as these statistics are, this report and other government studies have found that many states cite fewer serious deficiencies than actually occur and do not impose appropriate or effective remedies. When long-term care consumers are denied the option of holding facilities accountable for poor treatment, poor care and abuse through an open and unbiased legal process, the well-being of all long-term care residents suffers as a result. 

Real People, Real Harm


Far too often, the only remedy injured residents of long-term care facilities and their families have is the ability to hold the facility accountable in a court of law. Mandatory arbitration clauses take away this ability. With little or no oversight, facilities have no incentive to prevent the horrible cases seen here from being repeated. 

  • William Kurth, 84, a World War II veteran from Wisconsin, who was allowed to develop dehydration, malnutrition and pressure sores so severe his bones and organs were exposed — factors that led directly to his death.

  • Vunies High, 92, the sister of the legendary boxer Joe Louis, who froze to death when she wandered outside her assisted living facility wearing only her pajamas.

  • Ms. L.C. Gould, 85, a Florida nursing home resident who broke her hip in a fall when she was unattended in the bathroom. She subsequently died from complications of surgery for the broken hip, including the facility’s failure to assess and properly treat an infection.

Consumer Voice Resources


Other Useful Resources & Links


The Misuse of Antipsychotics Among Nursing Home Residents

 

The Consumer Voice is actively fighting to end the misuse of antipsychotic drugs as chemical restraints. Our campaign seeks to address this problem through:

Click on the links above to learn more about each aspect of our campaign. Click on the links below to find more information on the topic of the misuse of antipsychotic medications.

What is the Issue?


Residents of long-term care facilities are increasingly being placed on antipsychotic medications despite having no proper diagnosis to warrant their use. In 2016, 16.1% of nursing home residents were given antipsychotic medications. Use is much higher among residents with dementia - the very individuals that the Food and Drug Administration (FDA) warns are at serious risk of medical complications and death from taking antipsychotics.  The Society for Post-Acute and Long-Term Care Medicine found in a 2016 study that 68% of residents with dementia across 57 nursing home facilities were given antipsychotic drugs. In addition, far too often the dangers of these medications are not even discussed with residents and their families and are administered without consent.

Why is Ending the Misuse of Antipsychotics Important to Long-Term Care Consumers?


The misuse of antipsychotic medications in nursing homes can harm long-term care consumers in many ways. When used inappropriately among nursing home residents, antipsychotic medications can:

Place Nursing Home Residents at Increased Risk of Injury, Harm and Death: Antipsychotic drugs, when prescribed for elderly persons with dementia, can have serious medical complications, including loss of independence, over-sedation, confusion, increased respiratory infections, falls, and strokes. In fact, one study found residents taking antipsychotics had more than triple the likelihood of having a stroke compared to residents not taking these medications. Even worse, antipsychotics can be deadly; in 2005, the Food and Drug Administration (FDA) issued “Black Box” warnings for antipsychotics stating that  individuals diagnosed with dementia are at an increased risk of death from their use and that physicians prescribing antipsychotic medications to elderly patients with dementia should discuss the risk of increased mortality with their patients, patients’ families and caregivers. The FDA has also stated that these medications are not approved for the treatment of dementia-related psychosis, nor is there any medication approved for such a condition.

Be Employed as a Chemical Restraint for Nursing Home Residents: A chemical restraint is a drug not needed to treat medical symptoms and used because it is more convenient for facility staff or to punish residents. Although the Medicare and Medicaid programs prohibit chemical restraints, antipsychotic medications continue to be used for residents with dementia as a means of behavior control and/or as a substitute for good, individualized care. For this reason, it is important to ensure these medications are being used only when appropriate among residents with proper diagnoses for psychotic disorders.

Destroy the Quality of Life and Dignity of Nursing Home Residents: Antipsychotics can be so powerful that they sedate residents to the point where they become listless and unresponsive. Residents may be slumped in wheelchairs or unable to get up from bed; they may no longer be able to participate in activities they enjoy or even talk with their loved ones.

Cost All Long-Term Care Consumers Billions of Dollars: These medications often come with a hefty price tag, so the misuse and overprescribing of antipsychotics in long-term care facilities is extremely costly for the Medicare and Medicaid programs as well as for taxpayers. Ending the misuse of these medications among nursing home residents would help save precious health care dollars that could be used to serve beneficiaries. According to the Office of the Inspector General for the Department of Health and Human Services, more than half of atypical antipsychotic medications (a class of antipsychotic medications that work significantly differently from older, previously introduced antipsychotics) that affect at least 105,000 nursing home residents annually are being incorrectly paid for by Medicare, despite the drugs being deemed ineffective and potentially dangerous for the elderly population. Ending the misuse of these medications among nursing home residents would help save precious health care dollars that could be used to serve beneficiaries.

What are the Alternatives?


There are a number of alternative approaches that can be used to care for residents with dementia, such as:

  • Identifying and determining the cause of behavioral symptoms (anger, agitation, swearing, continuous wandering, etc.). Labeling people as “problem behaviors” only masks the problem.
  • Developing an individualized care plan to address these symptoms.
  • Good care practices, such as consistent staff assignments, adequate numbers of staff, staff training in how to care for people without physical or chemical restraints, increased exercise or time outdoors, monitoring and managing acute and chronic pain, and planning individualized activities have been emphasized by the Center for Medicare and Medicaid Services (CMS) as nonpharmacological treatments and therapies for residents with dementia and other cognitive disorders.
  • Staff training in how to care for people without physical or chemical restraints.

What are the Signs of Someone who has been Improperly Given Antipsychotics for Dementia?


The individual is exhibiting behavioral symptoms such as:

  • Agitation and anger
  • Screaming, even swearing
  • Hitting and pacing
  • Confusion, paranoia and delusions
  • Continuous wandering or
  • Any other significant change in behavior, including: lethargy, decreased appetite, and insomnia

If the individual has been showing any of the behavioral symptoms listed above, ask what has changed.

What Can I Do to Promote the Safety of My Loved Ones with Dementia in Nursing Homes?


  • Ask for a care plan conference and ask why each drug was ordered, the potential side effects of each drug and possible drug interactions
  • Make sure the right questions are asked – use why, when, where and how questions to consider as many reasons for the behavior as possible
  • Keep the focus on the resident’s needs
  • Monitor the care plan – if it’s not being followed, speak up immediately
  • Work closely with staff to help them get to know the resident
  • If drugs are being considered for behavioral symptoms, ask that other approaches be tried first
  • Speak with the doctor if s/he wants to order a psychoactive drug. Ask about the risks.

What can be done to prevent the Misuse of Antipsychotics?


As mentioned previously, the Consumer Voice is engaged in a multi-faceted campaign to end the misuse of antipsychotic medications in nursing homes, including the following:

Regulation and Guidance

The Consumer Voice, along with several groups, has provided input and feedback to the Centers for Medicare and Medicaid Services (CMS) on the agency’s National Partnership to Improve Dementia Care and Reduce Unnecessary Antipsychotic Medication Use in Nursing Homes. Advocacy efforts have included submitting written comments to CMS on its draft guidance to surveyors about regulations regarding antipsychotics and dementia care and its new surveyor, as well as meetings and conference calls with CMS top officials. In May of 2013, CMS released its new survey guidelines for antipsychotic medications, which can be read here.

In October 2011, the Centers for Medicare and Medicaid Services (CMS) announced that the agency was considering regulations that would require nursing homes to hire independent pharmacists to assess residents’ prescriptions. The regulations would have required consultant pharmacists in nursing homes to be free of conflicts of interests so they could make drug recommendations based on what is best for the resident – not what’s best for the pharmacy companies or drug companies. However, in April 2012, CMS decided NOT to publish these rules (click here to read CMS's comments on this decision). CMS instead launched the “Partnership to Improve Dementia Care Initiative” in May 2012, which sought to reduce the misuse of antipsychotics among nursing home residents by 15% by the end of 2012 (click here to read more about this CMS initiative.) The Partnership failed to meet its reduction goal by the end of 2012, only recently doing so in early 2014. Although the Consumer Voice commends CMS for launching this effort to reduce the misuse of antipsychotics, our organization strongly supports the implementation of federal regulations regarding the independence of consultant pharmacists and will continue to call on CMS to publish formal rules on this matter.

In addition, the Consumer Voice submitted recommended changes to federal regulations for long-term care facilities that would strengthen protections for residents and require informed consent before residents are prescribed antipsychotic medications. These recommendations can be read here.

Education

Toolkit

The National Long-Term Care Ombudsman Resource Center – funded by the Administration on Aging (AoA) and operated by the Consumer Voice – has developed a toolkit in part through a grant from AoA on the misuse of antipsychotic medications among nursing home residents. This toolkit contains take-away resources for consumers, family members and advocates describing how to recognize symptoms of the improper use of antipsychotics; the rights of residents under federal nursing home laws and regulations; and what consumers, family members and advocates can do to combat this problem. The contents of the toolkit include the following:

Misuse of Antipsychotics Issue Sheet

Misuse of Antipsychotics Issue Sheet (Spanish)

Misuse of Antipsychotics Issue Sheet (Chinese)

Promising Practices to Reduce the Use of Antipsychotic Medications

The Interpretive Guidelines: A Tool for Advocates

The Interpretive Guidelines: A Tool for Advocates (Spanish)

The Interpretive Guidelines: A Tool for Advocates (Chinese)

Information About Inappropriate Drug Use for Long-Term Care Consumers (Postcard)

Information About Inappropriate Drug Use for Long-Term Care Consumers (Postcard in Spanish)

Information About Inappropriate Drug Use for Long-Term Care Consumers (Postcard in Chinese)

Sample Letter to the Editor

Resource List

You can purchase a hard copy of the Toolkit, containing all of the above components plus five printed postcards and a disk with electronic copies of all of the resources, from the Consumer Voice store. You can also purchase the postcards separately in packs of ten from the Consumer Voice store and pass them out to consumers, family members and advocates!

Webinar

In September 2012, the National Ombudsman Resource Center hosted a webinar entitled "Ending Misuse of Anti-Psychotics in Long-Term Care." This webinar included a discussion of the dangers and signs of inappropriate psychotropic drug use, successful alternative person-centered treatments and therapies, resources for more information and current national and state-level efforts to reduce inappropriate medications. Expert speakers included Mary Evans, a Geriatrician/Medical Director; Morris Kaplan, a Nursing Home Administrator; and Claire Curry, a Consumer Advocate. The speaker presentations (in PowerPoint and PDF form) can be accessed below:

Mary Evans, MD CMD - President, Virginia Medical Directors Association 

PDF

Morris Kaplan, Esq., NHA - President, Kaplan Health Management, LLC and Operating Partner, Gwynedd Square Nursing Center (please note that the videos have been deleted from this version)

PDF

Claire Curry - Legal Director, Civil Advocacy Program of the Legal Aid Justice Center

PDF

Also, a recording of the webinar can be downloaded here.

Common Antipsychotics Inappropriately Prescribed to Nursing Home Residents


A study published in 2016 reported that the most commonly used antipsychotic medications in nursing homes is Risperdal, followed by Seroquel and Zyprexa. 

National Data on Antipsychotic Use in Nursing Homes


The Centers for Medicare and Medicaid Services (CMS) Nursing Home Compare Website - This resource allows users to research data on individual nursing homes, including the percentage of residents receiving antipsychotic medications under the section entitled 'Quality Measures'. It also lists the state average and the national average of antipsychotic use in comparison to each individual nursing home's data.

ProPublica's Nursing Home Inspect Website - This resource allows you to search nursing home inspection reports listing deficiencies cited in nursing homes nationwide. You can search by state, severity of the deficiency and by keyword (i.e. "antipsychotic") to find deficiencies related to the inappropriate use of antipsychotic medications in individual nursing homes.

Consumer Voice Resources


Watch our webinar, Obtaining Quality Care for Residents with Dementia, below.

Other Useful Resources and Links


Resources on Regulations

Government Reports

Advocacy Resources

News and Media Resources

The Consumer Voice Clearinghouse

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