Finding quality care and the "right fit" for a loved one needing long-term care, in any setting, is a daunting undertaking. The resources below may offer assistance in navigating the complex path, making it easier to locate important information. While extensive, they cannot address all potential challenges that may arise when facing long-term care for a loved one. We provide these linked resources to help families become strong advocates, not only in finding care for their own family members, but also to equip advocacy for system-wide changes in the long-term care arena, whether care takes place in a facility or in the home.
Learn about the different types of care and services for your loved one, including in one’s own home, in the home of a family member, or in a residential setting such as assisted living or nursing home, and how to plan and implement quality care. Purchase an extensive guide by the National Consumer Voice for Quality Long-Term Care.
CMS has a “one-stop shop” site with comparative information on many types of health and long-term care, including doctors, clinicians, hospitals, nursing homes including rehabilitation services, home health services, hospice care, inpatient rehabilitation facilities, long-term care hospitals, and dialysis facilities. Search by service, state, and other parameters.
The New York Long-Term Care Community Coalition (LTCCC) has compiled a state-by-state report of information on nursing home staffing, five-star ratings, special focus facilities, ombudsman programs, and more. The resource is searchable and can be filtered for geographical area, high-to-low rankings, and other categories to assist in honing your search.
The New York Long-Term Care Community Coalition (LTCCC) has published a report detailing the federal and state requirements for training of Certified Nursing Assistants (CNAs) and providing comparisons between the two for each state.
The Center for Medicare and Medicaid Services (CMS) has created a new portal to assist consumers and advocates to locate and research certified nursing homes, and to compare quality; and to find information about quality of a variety of health care providers from a single Internet site locationrather than searching numerous help sites.
On a cautionary note, A study by the Center for Public Integrity Urges Caution: the Care Compare website, published by the Centers for Medicare and Medicaid Services (CMS) lists information about nursing homes to aid consumers in choosing a facility. Unfortunately, some information on Care Compare is self-reported by the nursing homes themselves, and some of that information has been shown to be inaccurate. One important inaccuracy is that prior to 2019, over 80% of nursing homes were reporting more coverage by registered nurses than their payroll records show, thus claiming better care than they actually provided. Recently CMS has begun using payroll data directly to develop these statistics. Some information, however, continues to be either self-reported or indirectly influenced by self-reported information. Consumers should refer to Care Compare only with this caution in mind.
The Consumer Voice has released a report examining how largely self-reported data of the Quality Measures can obscure poor ratings in the other categories of staffing and health inspections, and advocating for needed reforms.
Justice in Aging has issued a brief advocating for reforms and outlining shortcomings in provider practices which deceive consumers and, in some cases, violate laws. The brief is focused on the need to provide more and better information on the federal Care Compare website allowing consumers to compare the quality of various facilities.
The Office of the Inspector General (OIG) has issued a report detailing significant inaccuracies in the CMS Care Compare system in listing deficiencies found in inspections.
A new report from the University of Chicago found widespread underreporting of falls and pressure ulcers on the CMS Care Compare website.
The Kaiser Commission on Medicaid and the Uninsured published a report on trends in care and deficiencies found in nursing facilities throughout the country, 2009 – 2014. NOTE: this report is NOT just for those interested in care of people who receive Medicaid – it impacts every resident of a facility that participates in federal reimbursement programs, and is a benchmark for measuring the quality of care even in privately-funded facilities.
CMS oversees the Special Focus Facility (SFF) program, which places special scrutiny on select nursing homes with a documented pattern of providing poor care. Almost 400 facilities are eligible for the Special Focus Facilities program because they have a “persistent record of poor care,” yet only about 80 are selected to participate due to CMS’ limited resources. Click here for the full list of facilities by state, including their participation status.
Senators Bob Casey (D-PA) and Pat Toomey (R-PA) published a report exposing this situation because these facilities are “indistinguishable” from participants in the program. "When a family makes the hard decision to seek nursing home services for a loved one, they deserve to know if a facility under consideration suffers from systemic shortcomings," Sen. Toomey stated.
AP News covered this story.
Despite these findings, the industry continues to claim they are providing good care, and getting better. They want to reduce oversight. CMA and LTCCC published a “fact vs. fiction” report on those claims, and a page to access data on numerous performance metrics.
The Center for Medicare and Medicaid Services (CMS) has updated its list of Special Focus Facilities and candidates for this designation. These are facilities receiving federal funds, with a history of poor survey results and repeated deficiencies. Advocates can search this list when searching for a nursing facility.
AARP has published an article with questions to ask everyone involved in making decisions about whether to provide care in the home if loved ones need long-term care.
Justice In Aging has a 1-page fact sheet about Medicaid-funded HCBS (Home & Community Based Services).
Medicare has a checklist to help consumers and families find the right nursing facility.
Consumer Voice has tips for choosing a nursing facility.
-Questions to ask when choosing a nursing facility, from a consumer’s and an advocate’s perspectives here.
Tips on spotting a poor nursing home here. HOWEVER – a word about the article’s link to “Best Nursing Homes 2014” at US News – this links to the 2022/23 information, but the ranking is based partly on SELF-REPORTING OF THE NURSING FACILITIES and should be taken with that caution in mind.
THE NY based LTCCC has published a series of guidebooks to assist those navigating the issues of assisted living, available here:
LTCCC has developed a primer on nursing home quality standards based on the CMS federal regulations.
Consumer Voice provides a quick reference describing culture change and person-directed principles in long-term care.
Consumer Voice provides resources related to getting quality care.
The Consumer Voice reported on the human and financial costs of poor nursing home care in 2011. The facts are still relevant today and have only become more urgent.
Consumer Voice has released a variety of resources for families and consumers who wish to age in their own homes, to assist in getting and keeping quality supports and services:
From an agency:
In your own or your loved one’s home: