Federal regulations establish – and require – a minimum standard for the care and services consumers receive in any setting from any provider of long-term care that accepts federal funds (Medicare, Medicaid). These regulations mandate not just the existence of needed care and services for each individual according to their needs, but a standard of quality for all the care and services, so that all individuals experience dignity and meaning in their daily lives.
Knowing these regulations provides a powerful tool for advocates. Even providers who do not accept federal funds must meet state-level regulations that are based on these same principles. Thus, even in private-pay care settings or settings such as assisted living, where there are no federal regulations but there are state regulations, the federal regulations provide a benchmark for quality of care and services. We therefore encourage our visitors to refer to these federal regulations as their guide to inform their advocacy regardless of setting or pay source for long-term care.
Remember: These are minimum standards. Any provider claiming they do not have to meet the federal standards for care and services is, in reality, saying they don’t have to provide even a minimum acceptable standard of quality care and services. Buyer beware!
Federal and state regulations provide a mechanism to hold providers accountable for the quality and appropriateness of their services. Many types of providers of long-term care services are governed by federal regulations. Those regulations are linked below. Some providers, however, such as assisted living and non-medical in-home care, are not always subject to federal regulations. State regulations governing these providers vary widely – and a few states do not have state regulations for some types of long-term care providers.
What then?
Providers go to great lengths to market their services, touting their quality and their consumer-oriented approach. Sometimes consumers learn, after they begin to receive services, that the marketing does not reflect their actual experience. There is a way to hold those providers accountable for the quality of the services they provide, whether or not government regulations specifically for those services exist. Each state has a consumer protection office which can be a helpful resource for consumers to seek redress if providers of long-term care do not live up to the promises of their marketing claims. You can find your state’s consumer protection office here.
Nursing Home Reform Law of 1987, which is the basis for Medicare and Medicaid regulations governing care and services in nursing facilities.
Summary of this bill prepared by Hollis Turnham, Esquire, which explains the major provisions of the law.
Revised Regulations for Long-Term Care Facilities: The federal requirements for quality of care and quality of life in nursing homes that accept Medicare or Medicaid funding, as defined in the Code of Federal Regulations for Nursing Facilities, 42CFR483 Subpart B.
Interpretive Guidance for surveyors, which further defines the intent of the new regulations. This is a clickable PDF: Click on the desired section and document will jump to the selected guidelines.
Informative briefs highlighting some of the regulation changes enacted in the 2016 revision and update:
In-depth 2-part summary of the key changes in the regulations:
Fact sheet as to why these revisions are vital to nursing home residents.
Summary of key changes in Phase Two of the new federal regulations that took effect November 28, 2017.
Topic-specific fact sheets on the revised nursing home regulations from the National Consumer Voice for Quality Long-Term Care:
The Centers for Medicare & Medicaid Services (CMS) recently issued revisions to nursing facility surveyor guidelines that explain and elaborate upon federal nursing facility regulations. Justice in Aging has created a new fact sheet to highlight the guidance’s discussion of resident rights related to medication use and facility collection actions, explaining the relevant law and the important rights confirmed by the recent guidance.
Information about the Center for Medicare & Medicaid Services, the agency that enforces these regulations.
What Medicare surveyors look for in quality for nursing homes.
For facilities – and empowered advocates – CMS has released survey tools that can be used to measure the quality of care for residents with dementia.
Summary of nursing home resident rights.
The Long-Term Care Community Coalition has published a Primer on Nursing Home Quality Standards, which includes regulatory requirements considered essential to resident safety, dignity and well-being, and featuring a Table of Contents with descriptive titles and clickable hyperlinks.
While there are no federal regulations governing Assisted Living facilities, many states have regulations and “best practices”. The new York Long Term Care Community Coalition (LTCCC) has published a report on best practices in assisted living and a state-by-state comparison of assisted living requirements and policies.
Justice In Aging has released a comprehensive report describing that “quality measures” in assisted living don’t truly measure quality, summarized here. Access the accompanying webinar materials here.
The CEO of the NY Long-Term Care Community Coalition (LTCCC) testified before the Senate Special Committee on Aging Hearing on Assisted Living Facilities at a hearing on January 25, 2024. His remarks are here.
Kaiser Health News has published a report detailing the harm caused by absence of consistent, strong regulations governing assisted living for people with dementia.
Justice in Aging has published this fact sheet explaining rights of residents in assisted living and similar care facilities that accept Medicaid Home and Community Based Services (HCBS) funding.
A recently implemented federal regulation provides eviction protections for assisted living residents whose care in the facility is funded through Medicaid. A new Justice in Aging FAQ explains the protections, how they have been implemented by states, and how advocates can use the regulations to protect residents from eviction.
Home & Community Based Services are governed by a variety of federal regulations depending upon age, disability, or choice of location and services needed:
Justice In Aging has published a primer on Home and Community Based Services through Medicaid.
Justice In Aging has a 1-page fact sheet about Medicaid-funded HCBS (Home & Community Based Services).
Information and resources regarding the new HCBS (Home and Community Based Services) settings rule and steps each state is making to comply with the new rule, featuring an Advocates Checklist which offers ideas and steps on how to get involved in a state's assessment and transition plan process, and the HCBS Worksheet for Assessing Services and Settings, which is intended to help State agencies, community members and other stakeholders in reviewing HCBS are currently provided in their states prior to submission of the State's transition plan.
Pew Family Trust discussion of the pros and cons of a new Medicaid rule requiring more individualized care planning in home-like community-based settings as alternatives to nursing homes for services for people with disabilities and the elderly.
Justice In Aging report on how the states are performing in their compliance with federal regulations requiring Person-Centered Care Planning for Medicaid Home and Community-Based Service recipients.
Often families are told their loved one cannot be served in a community-based setting because of wandering or other challenging behaviors. The Center for Medicare and Medicaid Services (CMS) has published guidance for providers instructing them how they are to meet these needs within the federal regulations.
Consumer Voice partnered with Justice In Aging on a guide to understanding this new rule and how it impacts care and services in adult day settings
and information on how you can advocate for person-centered services in adult day settings governed by these rules.
Guide to consumer rights in Medicaid-funded HCBS (Home and Community Based Services) .
Consumer Voice has published a guide to the new Home and Community Based Services rule.
Federal Regulations. For regulations related to patient care, assessment, quality, care coordination, etc., click on sections 484.50 – 484.80 of this resource.
The Center for Medicare Advocacy explains that home health aide services are often misrepresented and under-provided by home health agencies, and offers a case study as an example of how to advocate for needed home health aide services.
The Center for Medicare Advocacy has published a fact sheet explaining how Medicare can cover home health aide services, and describing what services these aides can perform.
The Center for Medicare Advocacy has a new factsheet on Medicare coverage of Home Health Services in light of the Jimmo court settlement.
Full federal regulations governing hospice care. Of particular interest to patients and advocates is Subpart C of this regulation, Patient Care.
Medicare Beneficiary Guides:
· Medicare Beneficiary Guide on Payment for Nursing Home Care
· Medicare Beneficiary Guide on Payment for Home Health Services
· Medicare Beneficiary Guide on Payment for Hospice Care Services
The Center for Medicare Advocacy (CMA) has published a “primer” on Medicare coverage for Home Health Services.
Medicare must now pay for “maintenance” therapies and treatments, not just “improvement” therapies and treatments! (This has always been the standard and federal regulation, but historically Medicare has denied payment for these services.) Read about the court settlement and its implications.
If you have had a claim denied for “maintenance” therapies or treatments, here is a resource to appeal the denial of payment.
The Center for Medicare Advocacy (CMA) has issued the following information further explaining the impact of the Jimmo settlement on therapies in various care settings:
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”.
Immediately following the CMS change in payment models for therapies in nursing facilities (“Patient-Driven Payment Model”), a large number of facilities have drastically reduced the presence of therapists. This article from the Center for Medicare Advocacy describes the change in payment model, the reduction in therapy staff, and what residents and advocates can do.
Changes in Medicare payment processes DO NOT change eligibility and coverage for skilled therapies, although they do provide incentives for providers to change their practices – and not in the interest of consumers. CMA explains HERE.
Medicare payment processes for Home Health services have also changed, but eligibility and coverage for Home Health services have not changed; as this fact sheet from CMS confirms.
The Center for Medicare Advocacy explains that under certain conditions, residents CAN leave a skilled nursing facility for short-term visits without losing their Medicare funding for their stay.
“Observation status” is NOT the same as inpatient admission to a hospital, and can affect one’s eligibility for Medicare coverage of not only the hospital stay, but also a skilled nursing home stay that may be needed after release from the hospital. Learn about this practice and what advocates can do to fight it in this infographic from CMA.
CMA offers a “toolkit” to learn about “observation status” and how to advocate.
A Federal Court has ruled that patients on “observation status” who are subsequently denied Medicare coverage of long-term care services have the right to appeal. Justice In Aging has prepared a press release announcing this “win”.
The Center for Medicare Advocacy (CMA) has developed a toolkit of information and tips to help empower Medicare beneficiaries and advocates to appeal unfair denials of Medicare funding for skilled nursing facility care.
CMA article expressing concern about the significant decline in appeals decisions favoring beneficiaries when claims are denied.
Tax breaks may be available to offset buy-in to a retirement community.
Justice In Aging sheds light on the financial impact of Medicaid’s Estate Claims practices.
Medicaid has rules safeguarding the assets of a spouse of a nursing home resident,
Nursing homes are prohibited from requesting or requiring a third party to guarantee payment for a resident's admission or continued stay. Despite this prohibition, some facilities violate the Fair Debt Collection Practices Act and the Fair Credit Reporting Act.The Consumer Voice hosted a webinar on illegal debt collection practices by nursing homes.
Justice in Aging and the National Consumer Law Center have also published Can a Nursing Home Force a Resident’s Family and Friends to Pay the Bill?, summarizing the relevant legal framework and offering advocates and consumers tips for fighting back should a nursing facility attempt to make someone other than the resident financially liable. The resource also outlines what to look for when reading admission agreements to avoid being caught up in such a situation.
The Centers for Medicare & Medicaid Services (CMS) recently issued revisions to nursing facility surveyor guidelines that explain and elaborate upon federal nursing facility regulations. Justice in Aging has created a new fact sheet to highlight the guidance’s discussion of resident rights related to medication use and facility collection actions, explaining the relevant law and the important rights confirmed by the recent guidance.
Federal Regulatory Agencies
· Center for Medicare and Medicaid Services
· U.S. Department of Health and Human Services
President Biden’s 2022 agenda for improving care in America’s nursing homes
The National Academies of Sciences, Engineering and Medicine (NASEM) April 2022 report on the quality of nursing home care and recommendations for addressing the persistent failures of the current system. Our Mother’s Voice founder and CEO participated in the panel discussions contributing to this report, served as a reviewer prior to release of the report, is acknowledged for her work on pages vii and ix, and is quoted on pages 150-151 and 402 of the report.
In an effort to clear the tremendous backlog of missed oversight surveys of nursing facilities, CMS is currently piloting an abbreviated survey process of nursing home oversight. The National Moving Forward Coalition, established in response to the 2022 NASEM report The National Imperative to Improve Nursing Home Quality: Honoring Our Commitment to Residents, Families, and Staff, has developed a proposal for how best to structure a targeted survey process to capture the essential components assuring quality of care and resident-centered practices that improve quality of life – not simply cut down on the workload of surveyors and level of oversight of facilities – which it has shared with CMS to inform its work. That proposal is summarized here.
October 21, 2022, White House announcement of changes to strengthen the “Special Focus Facilities” program which scrutinizes poorly performing nursing homes, as well as several initiatives to increase support to strengthen the long-term care workforce and other steps to improve nursing home quality.
2015 White House Conference on Aging Materials
(NOTE: This Conference is held once every 10 years.)
· Response on LTC services by the National Consumer Voice for Quality Long-Term Care
· Policy brief on healthy aging
· Policy brief on elder justice
· Response on elder justice by the National Consumer Voice for Quality Long-Term Care
· Policy brief on retirement security
· Summary from the White House Conference on Aging announcing new initiatives and updates
· The White House Conference on Aging final report from its 2015 series of meetings
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