The Affordable Care Act (ACA) created new health coverage options and financial assistance to expand coverage and help people remain insured even when life changes, such as job loss, might otherwise disrupt coverage. The ACA also established in-person consumer assistance programs to help people identify coverage options and enroll. A variety of professionals provide consumer assistance, including Navigator programs that are funded through state and federal marketplaces, brokers who receive commissions from insurers when they enroll consumers in private health plans, local non-profit organizations, and health care providers. Recent funding cuts have reduced the availability of Navigator programs.

In the spring of 2020, KFF surveyed consumers most likely to use or benefit from consumer assistance—nonelderly adults covered by marketplace health plans (also called qualified health plans, or QHPs) or Medicaid, and people who were uninsured—to learn who uses consumer assistance, why they seek help, and what difference it makes as well as who does not get help and why. The survey also explored differences in help provided by marketplace assister programs and brokers. Key findings include:

• Nearly one in five (18%) consumers who looked for coverage or actively renewed their coverage, or about seven million people, received consumer assistance in the past year. Most who enrolled in coverage with help said assistance made a difference; 40% think it is unlikely they would have found coverage without help.
• Another 12% of target consumers—nearly five million people—tried to find help but did not get it, suggesting there is a shortage of consumer assistance. Among target consumers who were not helped in the past year, two-thirds said they would likely seek consumer assistance if it were available.
• Roughly one in four marketplace enrollees who were helped by a broker or commercial health plan representative said they were offered a non-ACA compliant policy as an alternative or supplement to a marketplace policy. Brokers and commercial health plan representatives rarely help with Medicaid enrollment.
• The COVID-19 pandemic could disrupt health coverage for potentially millions of people, but the findings suggest that public understanding of available coverage options and how to apply is limited. Most people who are uninsured or have marketplace of Medicaid coverage do not know or are unsure if the ACA has been overturned, if their state has expanded Medicaid eligibility, or time frames when they can apply. Consumer assistance could help people identify and navigate replacement coverage options.
• Consumer satisfaction with marketplace plan coverage is generally high; satisfaction with Medicaid is even higher. Three-fourths of marketplace enrollees said, overall, they were very or somewhat satisfied with their plan coverage; among Medicaid enrollees, it was 93%. Medicaid enrollees were also significantly more satisfied with the level of cost sharing and with their choice of doctors and hospitals compared to marketplace enrollees.

Introduction

Getting, keeping, and understanding health insurance has long been challenging for consumers. While most non-elderly Americans obtain health insurance through their employers, ten years after enactment of the Affordable Care Act (ACA), many consumers without job-based coverage remain unsure of other coverage options or rules for applying. Many even struggle to understand basic health insurance terms and concepts. The ACA provided new, ongoing capacity for professional consumer assistance to help individuals get and keep health insurance, educate the public about coverage options and financial assistance, and resolve consumer questions and insurance problems.

By law, the ACA marketplaces operated by states or the federal government must establish Navigator programs that work year round, including during annual open enrollment, to help consumers apply for coverage and financial assistance through the marketplace – a single, “no-wrong-door” application is used to determine eligibility for marketplace subsidies and for coverage under Medicaid and the Children’s Health Insurance Program (CHIP). Navigators help consumers enroll in marketplace plans as well as Medicaid, and they also conduct outreach and public education and provide post-enrollment assistance. The marketplaces also certify, but do not finance, consumer assistance programs operated by nonprofit community organizations, community health centers, and others, collectively known as certified application counselor (CAC) programs. Health insurance agents and brokers, who are paid commissions by insurers for the policies they sell, also provide professional consumer assistance.

KFF surveys of consumer assister programs have found that millions of consumers turn to these professionals for help each year. The process of learning about health coverage options and applying for financial help can be complicated, and many people lack confidence to complete it on their own. KFF assister program surveys have found that while there is overlap in the services provided and people served by Navigators, CACs, and brokers, they are not interchangeable. Navigator programs, compared to CACs, tend to be more trained and resourced, and more likely to help consumers with complex applications. Brokers are less likely than marketplace assister programs to help consumers who are uninsured, or need help in another language, or who apply for Medicaid.

Since 2017, the Trump Administration reduced Navigator funding in 32 federal marketplace states by 84% on average, from $63 million to $10 million, and many counties now have no Navigator service. Other recent program changes included eliminating the requirement that Navigators maintain a physical presence in the area they serve. The Administration also reduced funding for outreach/advertising during open enrollment by 90%. In explaining funding reductions, the Administration said consumers have grown more familiar with marketplace enrollment procedures, private health insurers have increased spending on outreach and advertising, and enrollment assistance from brokers is more cost efficient.

This report presents data from a March-April 2020 national survey of individuals who are most likely to use and benefit from consumer assistance with health insurance shopping or enrollment: those ages 18-64 who had coverage through marketplace policies (qualified health plans, or QHPs) or Medicaid or who were uninsured at the time of the survey. The survey asked respondents whether they received help applying for coverage in the past year, the nature of help received, and the reasons they sought help or not. The survey also asked respondents about their interest specifically in Navigator assistance, their awareness of financial help and marketplace rules, and their confidence in finding new coverage if they were to become unable to afford current coverage as a result of the COVID-19 pandemic.

Who gets consumer assistance

Overall, 18% of consumers with marketplace or Medicaid coverage or uninsured consumers who looked for coverage reported getting help from someone other than a friend or family member (Figure 1). We estimate this represents about seven million individuals who received consumer assistance in the past 12 months (see Methods section for description).

For the most part, there were few differences in demographic characteristics between consumers who got help and those who did not. Consumers who were newly applying for coverage were as likely to get or seek assistance as were those who actively renewed health plans (consumers enrolled in marketplace plans can actively renew their coverage by returning to the marketplace and looking for a new plan or, if they take no action, can be auto-renewed). Additionally, consumers sought help at about the same rate regardless of their age or income, or whether they lived in metropolitan or non-metro areas. Hispanic consumers were more likely to receive assistance than were White consumers. Hispanic consumers may be more likely to seek help because of language barriers or immigration concerns.

Among consumers who renewed coverage this year without assistance, about one in five said they got help in a prior year when they first signed up for that coverage. Roughly a quarter (26%) of marketplace enrollees and one in five Medicaid enrollees who did not get help this year reported getting help when they first enrolled in their current coverage (Table 2).

Reasons consumers seek help

Consumers sought help for a variety of reasons, including lack of knowledge about coverage options and a complicated application process. Among consumers who received help 62% said they did not understand their coverage options and 52% said the process of applying was too complicated to complete on their own (Figure 2). Some consumers also sought help because they did not have internet access at home (18%), they had problems with the marketplace website (18%), or they needed assistance in Spanish (15%).

Consumers also reported challenges with multiple aspects of the application and plan selection process. Consumers applying for coverage and financial assistance must complete a multi-step process that typically begins with creating an online account. Those applying for financial assistance must report information about their income and household size; and are sometimes required to submit additional documentation by a deadline. Then consumers must review their plan options, including covered benefits, drug formularies, and provider networks and select one that best fits their needs. The process may vary somewhat depending on the type of coverage in which the person enrolls or whether they apply through the marketplace or through their state Medicaid agency. Each of these steps can pose challenges for consumers. Among uninsured adults who tried to find coverage, about eight in ten (83%) found at least one of these steps somewhat or very difficult. About six in ten (61%) consumers who enrolled in marketplace policies experienced difficulties. Consumers who enrolled in Medicaid were less likely to face challenges, though nearly four in ten found at least one step in the process somewhat or very difficult (Table 3).

Some consumers struggled to complete the Medicaid renewal process. About one in five (19%) of those covered by Medicaid in the past two years said their or their child’s coverage was terminated at some point. While a relatively small share of current Medicaid consumers (11%) reported a coverage termination, a larger share (41%) of uninsured consumers who had been covered by Medicaid themselves or had a child covered by Medicaid said that coverage had been terminated. Among those whose Medicaid coverage had been terminated at some time in the past two years, nearly three in ten (29%) said it was because they could not complete the redetermination process (Figure 3). Until recently, many states had experienced a decline in Medicaid enrollment, due in part to increased use of periodic eligibility checks and redetermination requirements that the Trump Administration had encouraged. If individuals were unaware of the need to complete the redetermination process or were unable to complete the process within the required timeframe, their coverage would be terminated even if they remained eligible. However, since this survey was conducted, states have had to suspend most Medicaid terminations until the end of the COVID-19 emergency period in return for receiving enhanced federal Medicaid matching funding.

Measures of the benefits of consumer assistance

Consumers valued help they received and many questioned whether they would have obtained coverage without assistance. Overall, 94% of consumers who got assistance said it was very or somewhat helpful. Four in ten consumers who got help enrolling in coverage said it was somewhat or very unlikely they would have gotten their coverage without help; 50% said it was somewhat likely they would have gotten coverage (Figure 4). In addition, 27% of consumers who received help enrolling said they returned to their assister with help for other post-enrollment questions, such as help understanding how to use their new insurance.

Many consumers sought help from the same assisters in previous years. Another indication of how consumers value enrollment assistance is the rate at which they return to assisters for help year after year. Most who received consumer assistance (60%) this year returned to someone who had helped them in the past, with 36% reporting they had been helped in two or more prior years by the person or agency who helped them this year (Figure 5).

Who provides consumer assistance

Consumers received help from a variety of sources, and often from multiple sources. A variety of entities provide consumer assistance, including Navigators, health insurance brokers, representatives from health plans, staff from health clinics, doctor’s offices, or hospitals, and community-based non-profits. People applying for Medicaid can also apply at state or local Medicaid offices. For consumers, identifying Navigator programs as such can be a challenge. In only in a handful of states is the Navigator program specifically branded – e.g. the NC Navigator Consortium in North Carolina. Navigator programs in most states are housed in community-based non-profits or in health clinics or hospitals; however, non-Navigator CAC programs also tend to be offered by non-profits, clinics, and hospitals. The Find Local Help Link in healthcare.gov does not distinguish Navigators from other CAC assister programs, although it does clearly identify brokers. According to the survey, among consumers who received assistance, 42% said they got help from more than one source. Including all sources of help, four in ten consumers who got help reported getting help from a Navigator, 36% said they got help from a broker, and 29% received help from a health plan representative. Fewer received help from a state Medicaid office or from a health care provider (Figure 6).

Consumers most frequently cited marketplace websites and word of mouth as the ways they learned about the person or organization that provided the help. About four in ten (42%) consumers who got help said they found assistance through a state or federal marketplace websites and 39% relied on word of mouth. Three in ten said they learned about assistance from a Medicaid office, and about one in five said the received a call or email from person or organization that helped them (21%) or heard about help through an advertisement or news coverage (18%). Fewer consumers cited outreach events (15%) or social media (6%).

Brokers provided assistance primarily to marketplace enrollees. Fourteen percent of marketplace enrollees overall reported receiving assistance from brokers compared to just 2% of Medicaid enrollees and 4% of people who were uninsured and sought coverage (Table 4). At the same time, both Medicaid enrollees and people who were uninsured were more likely than marketplace enrollees to have gotten help from a state Medicaid agency. Navigators helped consumers at about the same rate whether they were uninsured or enrolling in marketplace coverage or Medicaid.

Some people helped by brokers or health plan representatives or who bought their coverage directly from a web broker or insurer web site were offered non-ACA compliant products. The Trump Administration has encouraged the use of brokers as a replacement for Navigators, and promoted enrollment in marketplace QHPs via health insurer and commercial web broker sites, called enhanced direct enrollment (EDE) sites, instead of healthcare.gov. About one in five (22%) marketplace enrollees who were helped by brokers or plan representatives or who enrolled through EDEs say they were offered an alternative to QHPs, such as short-term policies with lower premiums that exclude pre-existing conditions and other benefits required of ACA-compliant plans (Table 5). One-quarter said they were offered other noncompliant policies, such as cancer policies or hospital indemnity policies, to buy as a supplement to marketplace coverage. Additionally, 81% of marketplace enrollees who signed up through EDE sites or who were assisted by brokers or health plan representatives said that the person or site recommended a specific policy that would be best for that consumer. By contrast, Navigators and certified application counselors are prohibited from recommending non-ACA compliant policies and are required to provide only objective information.

More were interested in consumer assistance than got it

Among people who actively looked for QHP or Medicaid coverage in the past year, more expressed interest in consumer assistance than received it. Of consumers who actively looked for coverage, 12%, or nearly 5 million consumers, tried to find enrollment assistance without success.

Consumers who looked for help but did not get it cited various reasons, mostly stemming from limited availability of in-person assistance. About one-third (32%) of consumers who wanted but did not get help said they could not find help close to home, and another three in ten said they could not get an appointment (Table 6). One in ten reported they were unable to get help in Spanish. These barriers reflect actions that many Navigator programs said they would need to take in response to federal funding reductions – including cuts in staff, advertising, and services for non-English speaking consumers. Consumers with QHP coverage in federal marketplace states were less likely to be helped by Navigators (6%) compared to QHP enrollees in state-run marketplace states (18%), — suggesting that federal funding cuts and other changes to Navigator programs may have reduced access to these assisters relative to state-based marketplaces that maintained consumer assistance.

In addition, most consumers who did not get help said they would likely seek consumer assistance if it were available. When asked if they would be interested in receiving marketplace assistance from trained experts who would help them, free of charge, to explore coverage options and apply for financial assistance, two-thirds of consumers who did not receive any consumer assistance said they would likely seek help from such a program if it were available in their area (Figure 7). Lack of awareness is likely a key barrier to obtaining in-person assistance. Although the ACA requires all marketplaces to provide Navigator programs, that a majority of consumers who were not helped said they would likely seek help from such a program if it were available suggests that many do not know if these programs are available or how to find them.

Seven in ten people who actively looked for health coverage in the past year did not receive consumer assistance and did not try to find it. The most frequently offered reason for not seeking help is that they did not feel they needed help (67%). The perceived need for help varied by coverage status. People enrolled in marketplace plans were more likely to say they did not need help compared to Medicaid enrollees and uninsured individuals who looked for coverage (79% vs. 67% and 56%, respectively). Other reasons for not seeking help included not knowing where to look for help (29%) or not having time to look for help (19%) (Table 7). In addition, as noted earlier, 26% of marketplace enrollees and one in five Medicaid enrollees who did not get help this year reported getting help when they first enrolled in their current coverage.

Consumer assistance during the coronavirus pandemic

The coronavirus pandemic has caused many to lose their jobs and worry about maintaining their health coverage. The KFF consumer assistance survey was fielded March 28-April 14, 2020, as the COVID-19 pandemic was emerging in the U.S. By mid-April, about 600,000 COVID-19 cases had been confirmed, compared to about five million cases today. Among people then enrolled in marketplace coverage, about half (55%) said they worried they would not be able to afford paying their premiums for the rest of this year due to the pandemic (Figure 8). Two-thirds (67%) said that if they were to lose current coverage as a result of the outbreak, they were not confident they would be able to find other coverage they could afford.

Many people have lost their job-based coverage because of the pandemic, but may not be aware of other coverage options. At the time the survey was conducted, 6% of those who were uninsured said they had recently lost health coverage due to the pandemic. Since then, KFF analysis estimates 26.8 million people who lost jobs as of early May are also at risk of losing their health benefits. While most of them would be eligible for other subsidized coverage through the marketplace or Medicaid, whether they can identify and enroll in new coverage for which they are eligible is another question. As noted earlier, about half of consumers experience difficulty with some aspect of the process of searching or applying for marketplace or Medicaid coverage. And even before the pandemic, nearly six in ten uninsured people were eligible for subsidized coverage under the ACA but not enrolled.

Many people lack basic information about the ACA and available coverage options. About a third (32%) of people correctly said the ACA is still the law; the rest were unsure or thought the law has been overturned (Table 8). While about half (48%) of people knew that marketplace enrollment is generally available only during open enrollment, fewer than four in ten (38%) were aware that Medicaid enrollment is available year-round. In addition, only one in five people knew whether their state had expanded Medicaid.

Consumer satisfaction with coverage

In general, consumers enrolled in marketplace plans or Medicaid expressed satisfaction with their coverage, with Medicaid enrollees expressing even higher levels of satisfaction. Three-fourths of marketplace enrollees said, overall, they were very or somewhat satisfied with their plan coverage; among Medicaid enrollees, it was 93% (Figure 9). Medicaid enrollees were significantly more likely than marketplace enrollees to say they were very or somewhat satisfied with copays or other out-of-pocket costs they face when they visit a doctor (92% vs. 66%) or when they fill a prescription (93% vs. 73%). Medicaid enrollees were also more likely than marketplace enrollees to express satisfaction with their choice of doctors and hospitals (86% vs. 77%).

Marketplace enrollees were less satisfied with the premiums they pay for coverage and with the annual deductibles associated with their plans. While Medicaid generally does not require enrollees to pay monthly premiums and does not have annual deductibles, marketplace plans charge premiums and impose deductibles and, even after accounting for subsidies, many enrollees find these costs burdensome. About one-third (35%) of marketplace consumers said they were somewhat or very dissatisfied with their monthly premium amount, and about half (48%) were dissatisfied with their deductible.

Attitudes toward alternative coverage options

Perceptions of the cost of health coverage discourage many people who are uninsured from applying. Two-thirds of those who are uninsured cited the cost of coverage as the main reason why they did not have health insurance. In part because of the perceived cost of insurance, just 29% of uninsured individuals said they tried to find coverage in the past year, and only one-third of those individuals (10% of all who were uninsured) completed an application. About half (54%) of uninsured consumers reported they have lacked coverage for two years or longer.

Eight in ten people who were uninsured said they would enroll in Medicaid if told they were eligible (Figure 10). Similar shares of uninsured people in states that had expanded Medicaid and in states that have not yet expanded responded they would enroll in Medicaid. These findings suggest that many uninsured residents in the 13 non-expansion states would enroll if their state expanded Medicaid. According to estimates, 24% of people who are uninsured are eligible for Medicaid, but are not enrolled. Lack of awareness of coverage options and barriers to enrollment may prevent those who are eligible from enrolling in coverage, pointing to the need for additional outreach and enrollment assistance.

Most uninsured consumers cannot afford to pay a lot for health insurance. When uninsured individuals were asked what premium amount they could afford to pay for coverage each month, about seven in ten said $75 or less, with 24% saying even $50 would be unaffordable (Figure 11). In 2019, the average marketplace enrollee paid a premium of $87 after taking into account premium tax credits.

Most uninsured consumers do not want plans with high out-of-pocket costs. While 28% of the uninsured would qualify for “free” bronze premium this year because the premium tax credit would cover 100% of the monthly premium, 75% of uninsured individuals said they would not be interested in such a policy, whose annual deductible typically exceeds $5,000 per year.

Most marketplace and uninsured consumers would not purchase short-term, limited duration policies, but would be interested in enrolling in a public option. The Trump Administration has promoted other less expensive policies – such as short-term limited duration insurance – that can charge lower premiums because they exclude pre-existing conditions and limit covered benefits. However, about eight in ten (82%) marketplace and uninsured consumers said they would not purchase such a policy (Figure 12). By contrast, 72% of these consumers said they would be interested in a government-administered plan, or public option, as a source of coverage.

Discussion

Consumer assistance in health coverage matters. An estimated seven million people with marketplace or Medicaid coverage or who were uninsured and looked for coverage received consumer assistance. Nine in ten of those who received assistance rated it highly, and 40% of those who enrolled in coverage with assistance think it is unlikely they would have the same coverage today if not for help they received.

There is also evidence of a shortage of consumer assistance. An estimated five million consumers sought help but could not get it. Among consumers who did not receive help, 66% said they would likely seek consumer assistance if it were available. Resources to provide consumer assistance through the marketplace are limited and have been cut severely in recent years. Yet, the need for consumer assistance still appears to be large, with this survey finding about half who apply for coverage find at least some aspect of that process difficult. Also, consumers who are most likely to apply for marketplace coverage or Medicaid generally are not very familiar with coverage options or procedures. Most don’t know if the ACA remains law, or if their state has expanded Medicaid eligibility, or when during the year they can apply for these different types of coverage.

There is evidence brokers are not a substitute for marketplace consumer assistance programs. Brokers rarely help people apply for Medicaid. A significant share of consumers say brokers and web brokers recommend other non-ACA compliant coverage options, which may have lower premiums but also fewer protections.

During this pandemic, millions are at risk of losing their job-based coverage. While most will be eligible for replacement coverage through the marketplace or Medicaid, transitioning to these programs will not be intuitive or easy for many people. Greater availability of consumer assistance would help people losing employer-based insurance navigate their coverage options, but those options still could prove to be unaffordable for some.

The Kaiser Family Foundation (KFF) Consumer Assistance with Health Insurance Survey is based on interviews with a probability-based sample of 2,049 respondents between the ages of 18 and 64 who reported having health insurance purchased from a state or federal marketplace (the “Marketplace” group); being covered by Medicaid, excluding those who receive Supplemental Security Income (the “Medicaid” group); or not being covered by health insurance (the “Uninsured” group). Interviews were administered online from March 28 through April 14, 2020 in English and Spanish. The survey was designed and analyzed by researchers at KFF, and KFF paid for all costs associated with the survey.

Ipsos conducted sampling, interviewing, and tabulation for the survey using the KnowledgePanel, a representative panel of adults age 18 and over living in the United States. KnowledgePanel members are recruited through probability sampling methods using address-based sampling. Panel members who do not have internet access are provided with a netbook and internet service.

For this study, certain types of panelists were selected at disproportionately higher rates in order to allow for subgroup analysis, including those with Marketplace coverage, those living in states with state-based Marketplaces, those living in states that have not expanded Medicaid, and African Americans.

The combined results have been weighted to adjust for the fact that not all survey respondents were selected with the same probability, to address the implications of sample design, and to account for systematic nonresponse along known population parameters. In the first weighting stage, the sample of all respondents selected for the survey (prior to any termination due to ineligibility) was weighted to match the demographic makeup of the 18-64 year-old population by sex, age, race/ethnicity, education, household income, region, metro status, and language proficiency (for Spanish-speaking respondents). Demographic targets came from the Census Bureau’s 2018 Current Population Survey, except for language proficiency which was derived from the 2018 American Community Survey.

In the second weighting stage, eligible respondents were separated into 3 groups (Marketplace, Medicaid, and Uninsured), and the first stage weight was used to create demographic benchmarks for each group. Qualified respondents were then weighted to the resulting benchmarks.

The margin of sampling error including the design effect for the full sample is plus or minus 3 percentage points. All statistical tests of significance account for the effect of weighting. Numbers of respondents and margins of sampling error for key subgroups are shown in the table below. For results based on other subgroups, the margin of sampling error may be higher. Sample sizes and margins of sampling error for other subgroups are available by request. Note that sampling error is only one of many potential sources of error in this or any other public opinion poll. Kaiser Family Foundation public opinion and survey research is a charter member of the Transparency Initiative of the American Association for Public Opinion Research.

The estimates of the number of people helped and the number of people who sought help but did not get it were calculated by first estimating the universe for the target population, which is comprised of nonelderly adults enrolled in marketplace plans as of March 2020 who are in a new plan or actively renewed their 2019 plan; non-elderly who enrolled in Medicaid in the past year or actively renewed their Medicaid coverage, and who were not receiving SSI benefits as of that date; and nonelderly uninsured who actively sought coverage in the past year.

Marketplace enrollees. According to the Early 2020 Effectuated Enrollment Snapshot, 10.7 million people selected or were reenrolled in a marketplace plan as of March 15, 2020. In addition, based on data from the 2020 Marketplace Open Enrollment Data, 880,000 adults enrolled in the Basic Health Plan (BHP) in New York and Minnesota for a total of 11.6 million marketplace and BHP enrollees. From the survey, 72% of marketplace enrollees are either in a new plan for 2020, or actively renewed their 2019 plan. Total marketplace enrollees newly enrolled or actively renewed in 2020 was 8.4 million.

Medicaid enrollees. Current Medicaid enrollment data that separate non-elderly, nondisabled adults are unavailable. Using 2018 data from a KFF analysis of Medicaid enrollees with disabilities, there are an estimated 25.5 million nonelderly, non-disabled adults on Medicaid. To include all the individuals helped, the children of adults on Medicaid were also included. According to the survey 47% of Medicaid enrollees reported one or more children was also enrolled in Medicaid at the time of the survey. Estimating one child per adult is about 12 million children. Total Medicaid enrollees in the sample universe was 37.5 million. This total was then reduced to include only those who enrolled in the past 12 months (20% from the survey or 7.5 million) or who actively renewed their coverage (39% from survey or 14.6 million) for a total of 22 million in the target population.

Uninsured individuals. Using data from 2018, there were 27.9 million nonelderly individuals without health coverage. According to the survey, 29% of people who were uninsured actively looked for coverage for a total of 8.1 million.

Summing the estimates results in 38.5 million people who could have been helped. According to the survey, 18% of people who could have been helped, actually got help or about 7 million people. Additionally, 12% of people who could have been helped sought help but didn’t get it or nearly 5 million people.

Introduction

There has been sustained attention on nursing homes in the wake of COVID-19, from the initial widespread outbreak at a facility in Washington State to the disproportionate number of cases and deaths among residents and staff nationally throughout the pandemic. Nursing home residents include 1.2 million seniors and nonelderly people with disabilities living in over 15,000 facilities. These residents and the 3 million people who work in skilled nursing or residential care facilities are at increased risk of infection due to the highly transmissible nature of the coronavirus, combined with the congregate nature of facility settings and the close contact that many workers have with patients. If infected, many residents are at increased risk of adverse health outcomes and death from COVID-19, due to old age and/or underlying chronic health conditions. Over 40% of all COVID-19 deaths have been residents or staff of long-term care facilities, with even higher numbers in some states. At the pandemic’s outset, nursing home oversight and response was concentrated at the state level, which led to different protocols across states and facilities, with little federal involvement and substantial shortages of personal protective equipment and coronavirus tests.

As a result of the pandemic’s impact, policymakers, residents, staff, and others have raised questions about whether there has been sufficient federal and state oversight of and guidance for nursing homes, and CMS has released a series of guidance and other policy actions. The Social Security Act authorizes the Health and Human Services (HHS) Secretary to establish requirements relating to nursing home residents’ health, safety and well-being as conditions for facilities to receive payment from the Medicare and Medicaid programs. Nursing homes can be certified as Medicare skilled nursing facilities (SNFs)¹  and/or Medicaid nursing facilities (NFs).²  Medicare is the primary payer for about 12 percent of nursing home residents, with coverage limited to short-term stays for skilled nursing care or rehabilitation. Medicaid is the primary payer for 62 percent of nursing home residents, covering both short-term skilled nursing care and rehabilitation, as well as long-term care. This brief answers key questions about nursing home oversight and explains how federal policy has changed in light of COVID-19.

1.  How are the federal requirements for nursing home oversight enforced?

Certification of nursing home compliance with federal Medicare and/or Medicaid requirements generally is performed by states through regular inspections known as surveys.³  States receive 75% federal matching funds for Medicaid nursing facility survey and certification activities,⁴  while Medicare SNF survey and certification activities are funded by a discretionary appropriation. Appendix 1 explains the survey process. States also must investigate complaints of facility violations of federal requirements⁵  and allegations of abuse, neglect, and misappropriation of resident property by nurse aides or other facility service providers⁶  and conduct periodic educational programs for facility staff and residents about current regulations, policies, and procedures.⁷ 

The penalties for facilities found to be out of compliance with federal requirements vary depending on whether the deficiency is determined to immediately jeopardize residents’ health or safety.⁸  For deficiencies that result in immediate jeopardy, a facility is subject to the appointment of temporary management to oversee operations while deficiencies are corrected or termination from the Medicare and/or Medicaid programs with the safe and orderly transition of residents to another facility or community setting.⁹  However, a facility may continue to receive Medicare and/or Medicaid payments for up to six months after a deficiency finding, if the state finds that this alternative is more appropriate than program termination. In these instances, the facility must agree to repay Medicare funds, and the state must agree to repay federal Medicaid funds, if corrective action is not taken according to a Secretary-approved plan and timetable. For deficiencies that do not result in immediate jeopardy, a facility may be allowed up to six months to correct deficiencies. A facility that does not come into substantial compliance within three months is subject to denial of Medicare and/or Medicaid payment for all individuals admitted after the deficiency finding date. A facility that is not in substantial compliance within six months is subject to Medicare program termination and discontinuance of Medicaid federal financial participation.

Civil money penalties (CMPs) can be imposed for the number of days a facility is not in substantial compliance or for each instance that a facility is not in substantial compliance.¹⁰  CMPs can range from $6,525 to $21,393 for deficiencies constituting immediate jeopardy, and from $107 to $6,417 for deficiencies that do not constitute immediate jeopardy but either caused actual harm or did not cause actual harm but have the potential for more than minimal harm. Per instance CMPs range from $2,140 to $21,393. A portion of CMP funds collected are returned to states and can be used for activities that protect or improve care quality or resident quality of life as approved by CMS, such as supporting and protecting residents during facility closures, relocating residents, supporting resident and family councils and other consumer involvement, facility improvement initiatives such as staff and surveyor training or technical assistance for quality assurance and performance improvement programs, or developing and maintaining temporary manager capability such as recruitment, training, or system infrastructure expenses.

Additional remedies apply to facilities with patterns of deficiencies over time. A facility that is found to provide substandard care quality on three consecutive standard surveys is subject to denial of Medicare and Medicaid payments for all new admissions or entirely and is subject to state monitoring until the facility demonstrates that it has regained and will remain in substantial compliance.¹¹  CMS and/or the state also may direct staff in-service training for facilities with patterns of deficiencies.

2.  How have the federal nursing home requirements evolved over time?

Prior to the late 1960s, nursing homes were “essentially unregulated in most states,” and care quality was generally considered to be poor.¹²  The creation of Medicare and Medicaid in 1965 led to greater federal involvement in nursing home regulation with the establishment of federal criteria to certify facilities. However, concern about care quality and inadequate enforcement continued through the 1970s and 1980s, leading to the appointment of an Institute of Medicine (IOM) committee to recommend changes. The IOM recommendations included incorporating resident assessment, care quality, quality of life, and residents’ rights in federal conditions of participation and making both regulatory requirements and the survey and certification process more “resident-centered and outcome-oriented,” with a shift in emphasis “from facility capability to facility performance.”¹³  The IOM report also recommended increased federal funding and oversight of state survey agencies and establishing intermediate sanctions short of program termination and facility closure to enforce compliance. Appendix 2 contains additional background about the evolution of federal nursing home oversight.

The IOM recommendations led to changes adopted in the 1987 Nursing Home Reform Act, which established Medicare SNF and Medicaid NF requirements in three main areas: service provision, residents’ rights, and administration and other matters (Appendix Table 1). The Nursing Home Reform Act strengthened federal standards, inspections, and enforcement provisions; merged Medicare and Medicaid standards; required comprehensive resident assessments; set minimal licensed nursing staff requirements; and required inspections to focus on care outcomes.¹⁴  Service provision requirements are related to quality of life, care plans, resident assessment, services and activities, nurse aide training, physician supervision and clinical records, social services, and nurse staffing information.¹⁵  Facilities must protect and promote specific residents’ rights including free choice, freedom from restraints, privacy, confidentiality, accommodation of needs, grievances, participation in resident and family groups and other activities, examination of survey results, and refusal of certain transfers. Additional requirements govern the use of psychopharmacologic drugs, advance directives, access and visitation, equal access to quality care, admissions, and protection of resident funds. Administration requirements include licensing and life safety code, sanitary and infection control and physical environment standards.

To help address continuing quality concerns, the 2010 Affordable Care Act (ACA) included some additional reforms. The Nursing Home Transparency and Improvement Act, adopted as part of the ACA, sought to address complex ownership, management, and financing structures that inhibited regulators’ ability to hold providers accountable for compliance with federal requirements. The ACA also incorporated the Elder Justice Act and the Patient Safety and Abuse Prevention Act, which include provisions to protect long-term care recipients from abuse and other crimes.

The 2016 nursing home regulations issued by the Obama Administration were the first comprehensive update in 25 years. The original consolidated Medicare and Medicaid facility participation requirements were issued in 1989, following the Nursing Home Reform Act, and revised in 1991. The 2016 regulations sought to account for ensuing innovations in resident care and quality assessment and an increasingly diverse and clinically complex resident population.¹⁶  New requirements added by the 2016 regulations most relevant to issues raised by COVID-19 include those related to infection control, facility assessment, and emergency preparedness (Box 1). The 2016 regulations also revised provisions related to resident rights, adopting a greater emphasis on person-centered care; reporting of abuse and neglect; and transfer and discharge rights. Additionally, the 2016 regulations added a new section on behavioral health services, adopted a competency requirement for determining staffing sufficiency and new staff training program requirements, and implemented ACA requirements for facility quality assurance and performance improvement programs¹⁷  and compliance and ethics programs.¹⁸  The regulations were implemented in three phases from 2016 through 2019.

In July 2019, the Trump Administration proposed a number of changes to the 2016 regulations, which it said would increase provider flexibility and reduce regulatory burden. The proposed changes, which are still pending, include:

• Removing the existing requirement that the infection preventionist work at the facility at least part-time or have frequent contact with infection prevention and control program staff and instead requiring that the infection preventionist has “sufficient time” at facility to meet program objectives; and
• Modifying current provisions governing the use of psychotropic medications, the grievance process, the timeframe for retaining staffing data, the quality assurance and performance improvement program, and the compliance and ethics program, among other areas.

Also in July 2019, the Trump Administration issued a final regulation that eliminated the existing ban on pre-dispute arbitration agreements.

3.  What was the state of nursing home quality before and during COVID-19?

Infection control deficiencies were widespread and persistent in nursing homes prior to the COVID-19 pandemic, according to a May 2020 GAO report.²⁰  The GAO found that “infection prevention and control deficiencies were the most common type of deficiency cited in surveyed nursing homes, with most nursing homes having an infection prevention and control deficiency cited in one or more years from 2013 through 2017 (13,299 nursing homes, or 82 percent of all surveyed homes).” All states had facilities with infection prevention and control deficiencies cited in multiple consecutive years, indicating “persistent problems.” These deficiencies include staff failing to regularly use proper hand hygiene or failing to implement preventive measures to control infection spread during an outbreak, such as isolating sick residents and using masks and other personal protective equipment (PPE). GAO also found that nearly all infection prevention and control deficiencies were classified by surveyors as not severe, meaning the surveyor determined that residents were not harmed, and implemented enforcement actions for these deficiencies were typically rare. GAO plans future reports to examine CMS guidance and oversight of infection control more broadly as well as CMS’s response to COVID-19.

In regular surveys conducted from January 2019 through March 2020, nearly half of facilities received an infection control deficiency (Figure 1). Most facilities (80%) received a deficiency related to resident quality of life or care, and 37% received an abuse/neglect/exploitation deficiency (Figure 1). Just under 20% of facilities received a CMP, with the average amount just over $25,000 (Figure 1). During this same time period, 62% of facilities had substantiated complaints regarding violations of federal requirements, and 39% of facilities had incidents with alleged or suspected resident abuse, neglect, or misappropriation of property (Figure 1).

In response to COVID-19, CMS suspended state survey activities in March 2020, except for those related to infection control and immediate jeopardy. Nearly all nursing homes have received these targeted surveys since March 4, 2020, with preliminary inspection reports revealing only a small share with deficiencies (Figure 2). Just 13% of the nearly 6,000 facilities surveyed between March 4 and May 30, 2020 were cited as deficient in meeting any federal requirements. Though nursing homes across the country have experienced high rates of COVID-19 cases and deaths, the data does not point to quality deficiencies as a reason for this occurrence.

4.  How has nursing home oversight changed in light of COVID-19?

As the number of COVID-19 cases and deaths in nursing homes increased, CMS has issued guidance about how facilities should respond to the pandemic (Figure 3). A February 2020 informational bulletin advised health care facilities to review the Centers for Disease Control (CDC) COVID-19 advisory and recommendations as well as their own infection control policies. As noted above, CMS suspended state survey activities in March 2020, except for those related to infection control and immediate jeopardy. That same month, CMS infection control and prevention guidance advised facilities to screen visitors and staff and about when to transfer residents to and accept those discharged from hospitals. CMS also required facilities to restrict all visitors except for compassionate care circumstances and cancel all communal dining and group activities, released guidance allowing facilities to perform COVID-19 tests, and issued a number of Section 1135 blanket waivers to help facilities’ emergency response. In April 2020, CMS issued guidance directing facilities to screen all staff, residents, and visitors for symptoms, ensure staff use PPE “to the extent available,” and designate separate staff and facilities or units for COVID-19 patients.

In April 2020, CMS announced the formation of an independent commission to conduct a comprehensive assessment of facility response to COVID-19. The commission is expected to make recommendations to protect residents from COVID-19 and improve care delivery responsiveness; strengthen efforts to rapidly identify and mitigate infectious disease transmission in nursing homes; and enhance strategies to improve compliance with infection control policies. The commission also is charged with identifying approaches to better use data to enable federal, state, and local entities to address the current spread of COVID-19 within facilities, analyze the impact of efforts to stop or contain the virus within facilities, and identify best practices to address COVID-19 that CMS or states could adopt. Commission members are to include residents, families, resident/patient advocates, industry experts, clinicians, medical ethicists, administrators, academics, infection control and prevention professionals, state and local authorities, and other experts. Twenty-five Commission members were announced in June 2020, and a final report is expected in fall 2020.

As of May 2020, facilities must report COVID-19 data to the CDC and provide information to residents and their families. Prior to this interim final rule, facilities were not required to report infectious disease information to the CDC, though they typically report to state and/or local health departments. The lack of centralized data contributed to difficulty in tracking disease spread and coordinating dissemination of personal protective equipment and testing supplies. The new rule requires weekly reporting of suspected and confirmed infections among residents and staff including residents previously treated for COVID-19; total deaths and COVID-19 deaths among residents and staff; PPE and hand hygiene supplies in the facility; ventilator capacity and supplies in the facility; resident beds and census; access to COVID-19 testing while a resident is in the facility; staffing shortages; and other information specified by the Secretary.

CMS is publicly reporting the data, and recently announced additional actions based on the data. In July 2020, CMS sent “Task Force Strike Teams” of clinicians and public health officials to 18 nursing homes in six states experiencing an increase in COVID-19 cases. The Teams are focused on determining immediate actions and needed resources to reduce virus spread. In late July 2020, CMS also announced that it would send a weekly list of nursing homes with an increase in cases to states.

The new rule also requires facilities to inform residents, their representatives, and families of confirmed or suspected COVID-19 cases among residents and staff by 5 pm the next calendar day following a single confirmed case or three or more residents or staff with new onset of respiratory symptoms within 72 hours of each other. Facilities also must provide cumulative updates at least weekly by 5 pm the next calendar day following each subsequent occurrence of confirmed infection or whenever three or more residents or staff with new onset of respiratory symptoms occur within 72 hours of each other. Facilities must include information on mitigating actions implemented to prevent or reduce the risk of transmission including whether normal operations will be altered such as restrictions or limitations on visits or group activities. Facilities cannot release personally identifiable information and can communicate through paper notices, a listserv, a website post or recorded phone messages.

In May 2020, CMS issued nursing home reopening recommendations and an informational toolkit with best practices for states to mitigate COVID-19 in nursing homes. The reopening guidance sets out criteria for relaxing restrictions using a phased approach and mitigating the risk of resurgence, including case status in the community, case status in the facility, adequate staffing, access to adequate testing, universal source control (masks, social distancing, and hand washing for visitors), adequate access to PPE for staff, and local hospital capacity. The guidance also includes considerations for allowing visitors and services and for restarting routine state survey activities in each phase. Additionally, quality improvement organizations (QIOs) under contract with CMS are providing technical assistance with a focus on about 3,000 low performing facilities with a history of infection control issues to help identify problems, create and implement an action plan, and monitor compliance. For example, QIOs train staff on proper PPE use, appropriate resident cohorting, and safe resident transfers. States also can request QIO technical assistance targeted to facilities that have experienced an outbreak.

In June 2020, CMS issued additional guidance to states on COVID-19 survey activities and enhanced enforcement for infection control deficiencies. CMS noted that focused infection control surveys pursuant to the March 2020 guidance had been completed in 53 percent of facilities, with wide state variation. As a result, states that have not completed all of these surveys by July 31, 2020 must submit a corrective action plan outlining their strategy to complete these surveys within 30 days. If all surveys still are not complete after the 30-day period, states’ CARES Act FY 2021 allocation may be reduced by up to 10%. Subsequent 30-day extensions could result in additional reductions up to 5%, with funding redistributed to states that have completed their surveys. The CARES Act provided $100 million for nursing home inspections focused on those with COVID-19 community spread from FY 2021 through FY 2023, $81 million of which will be available to state survey agencies. This represents a 6% annual increase in the nursing home survey and certification budget, which had remained at $397 million annually since October 2014. CARES funds may be used for state surveys, strike teams, enhanced surveillance or monitoring of nursing homes, or other state-specific interventions. The June 2020 guidance also establishes enhanced enforcement remedies for infection control deficiencies including directed plans of correction, discretionary denial of payment for new admissions, and CMPs.

The June 2020 guidance also announced three additional survey requirements: (1) states must perform on-site surveys of nursing homes with previous COVID-19 outbreaks by July 1, 2020; (2) states must perform on-site surveys within three to five days of identification of any nursing homes with three or more new suspected or confirmed cases since the last CDC COVID-19 report or one confirmed resident case in a facility that previously was COVID-free; and (3) starting in FY 2021, states must perform annual focused infection control surveys of 20 percent of facilities. States could forfeit 5% of their annual CARES Act allocation for failing to perform these activities.

The June 2020 guidance also authorizes states to expand survey activities to include more routine surveys once a state has entered phase 3 of the nursing home reopening guidance or earlier at state discretion. The expanded activities include complaint investigations that are not immediate jeopardy, revisit surveys to any facility with a removed immediate jeopardy finding but that is still out of compliance, special focus facility and special focus facility candidate recertification surveys, and nursing home and intermediate care facility for individuals with intellectual and developmental disabilities recertification surveys greater than 15 months. When expanding survey activities, states should prioritize facilities with a history or allegations of noncompliance regarding abuse or neglect, infection control, violations of transfer or discharge requirements, insufficient staffing or competency, or other care quality issues such as falls or pressure ulcers.

In late July 2020, CMS began requiring, rather than recommending, that all staff be tested weekly in nursing homes in states with a 5% or greater positivity rate. HHS also is distributing rapid diagnostic tests to nursing homes in COVID-19 hotspots through a one-time procurement to facilitate on-site testing of residents and staff. CMS and the CDC are offering COVID-19 training to nursing homes, which includes cohorting strategies and using telehealth to mitigate virus spread.

5.  What are the key challenges for nursing homes as the pandemic continues?

As the pandemic continues, state survey agencies may face issues related to funding, capacity, and data. CMS will withhold CARES funds from state survey agencies that do not timely complete inspections, but these penalties may be too blunt for agencies whose lack of compliance stems from insufficient funding in the first place. As noted above, prior to the new CARES Act funds, the survey and certification budget had remained flat since 2014. It remains to be seen whether these new funds will be sufficient for state agencies to perform regular surveys as well as increased oversight in the foreseeable future resulting from the pandemic. While facilities are now reporting COVID-19 cases and deaths to CMS, these data are not cumulative prior to May 8, 2020, and it will be important for both state survey agencies and CMS to continue to monitor data and adjust policy guidance and facility oversight as needed.

Nursing facilities also face a number of challenges in their continued pandemic response. Nearly $5 billion in federal provider relief funds has been allocated to nursing facilities to cover health care related expenses or lost revenues attributed to coronavirus. On July 22, 2020, HHS announced that an additional $5 billion from the provider relief fund is being allocated to Medicare-certified long-term care facilities and state veterans homes. These funds may be used to hire additional staff, implement infection control “mentorship” programs with subject matter experts, increase testing, and provide additional services, such as technology so residents can connect with their families if they are not able to visit. As of June 28, 2020, nearly one in three nursing homes nationally report a shortage of staff and/or PPE. Despite federal legislation generally requiring insurers to cover coronavirus testing without cost-sharing, recent federal guidance concludes that insurers do not have to cover coronavirus “testing conducted to screen for general workplace health and safety (such as employee “return to work” programs).” This leaves open the question about who will pay for regular tests needed for facility staff to safely work during the pandemic. It also remains to be seen whether facilities will be able to maintain adequate staffing levels as the pandemic continues. CMS has lifted its emergency waiver of the staffing data submission requirement, and facilities must submit regular staffing data for April through June 2020 by August 14, 2020. Facilities also may be under financial strain due to lower occupancy levels as a result of the pandemic.

Conclusion

While the data and experience to date do not show a direct link between nursing home quality and COVID-19 cases, the pandemic has brought renewed attention to issues of nursing home quality and oversight at the federal and state levels. Nursing home quality concerns have existed for decades. With the current focus on challenges facing nursing homes and state survey agencies as they respond to the pandemic, policymakers may revisit whether federal Medicare and Medicaid requirements should be adjusted to improve oversight and whether additional funding is needed to support providers and agencies to ensure sufficient capacity and resources. These issues are likely to continue to be the subject of policy discussion and debate as long-term care coronavirus cases, particularly in “hotspot states” with wider community transmission continue to rise. While most nursing facilities are Medicare-certified, a small number (315 or 2%) are only Medicaid-certified and therefore appear ineligible for a share of the additional provider relief funds announced on July 22.

More broadly, seniors and people with disabilities who receive long-term services and supports in other settings, such as assisted living facilities, intermediate care facilities for people with intellectual/developmental disabilities, institutions for “mental disease,” and group homes, also are at increased risk of serious illness if infected with coronavirus based on older age and/or chronic health conditions. Unlike nursing homes, other long-term care congregate settings are primarily regulated by states, leading to greater variation in quality protections and lack of standardized reporting about coronavirus cases, deaths, staffing, supplies, and other data necessary to understand and respond to the pandemic and understand its full impact on all people who receive long-term care services and the staff who provide them.

Appendix 1: Nursing Home Survey and Certification Process

A facility is subject to a standard survey, without advance notice, at least once every 15 months.²¹  If found to have provided substandard care quality,²²  a facility is subject to an extended survey within two weeks of the standard survey.²³  In addition, states may conduct special surveys within two months of any change in facility ownership, administration, management, or nursing director to determine whether care quality has declined as a result of the change.²⁴  The Secretary also can conduct special surveys when the Secretary has reason to question facility compliance with federal requirements.²⁵  Standard surveys include a case-mix stratified sample of residents.²⁶  Extended surveys review and identify facility policies and procedures that produced substandard care quality, expand the sample size of resident assessments reviewed, and review staffing, in-service training, and if appropriate, consultant contracts.²⁷ 

Facility surveys are conducted by a multi-disciplinary team using a protocol developed by the Secretary.²⁸  The survey team must include a registered nurse and may include physicians, physician assistants, nurse practitioners, physical, speech, or occupational therapists, dieticians, sanitarians, engineers, licensed practical nurses, social workers, or other professionals.²⁹  The survey team cannot include anyone who has served as staff or a consultant to the facility in the prior two years or who has a personal or familial financial interest in the facility.³⁰ 

Survey and certification information, including statements of deficiencies, must be made publicly available by states and the Secretary within 14 days after the facility is notified.³¹  States submit this information, including any enforcement actions, to the Secretary on the same day that the facility is notified, and the Secretary uses this information to update the federal Nursing Home Compare website at least quarterly.³²  The website must include facility staffing data, including resident census data and hours of care provided per resident per day and information on staffing turnover and tenure; links to state survey and certification programs, inspection reports, and facility plans of correction or report responses; information on how to file a complaint with the state survey and certification program and the state long-term-care ombuds program; summary information on the number, type, severity, and outcome of substantiated complaints; the number of adjudicated instances of criminal violations by the facility or its employees committed within the facility regarding abuse, neglect, exploitation, criminal sexual abuse or other violations resulting in serious bodily injury; and CMPs levied against the facility, its employees, contractors, and other agents. States also must notify the state long-term care ombudsman of any findings of noncompliance or adverse actions taken against facilities.

Appendix 2: History of Federal Nursing Home Requirements

After the creation of the Medicare and Medicaid programs, it soon became clear that “[s]trict enforcement of federal standards would have barred most nursing homes from participating in the Medicare program”³³  in the mid-1960s, and certification of nursing homes to participate in Medicaid was left to the states.³⁴  After increased congressional and media attention to substandard facility conditions and lax government oversight, revised federal regulations certifying facilities to participate in Medicare and Medicaid were established in 1974. Continued concern about care quality and inadequate enforcement led to new proposed federal regulations issued in 1980 by the Carter Administration. However, the nursing home industry objected to the new regulations’ projected costs, and the regulations were rescinded by the Reagan Administration. In turn, the Reagan Administration’s subsequent proposal, which would have deleted or relaxed many existing standards, was set aside after opposition from consumer advocates, states, Congress, and providers. The impasse led to the appointment of an Institute of Medicine (IOM) committee to recommend changes.

The 1986 IOM committee report contained numerous recommendations to enhance nursing home care quality and resident quality of life by improving nursing home regulation.³⁵  While the IOM committee credited the 1974 regulations with contributing to better care quality, it noted “substantial room for improvement” due to weaknesses in the regulations and uneven administration and enforcement by states.³⁶  At the time of the IOM study, “there [was] broad consensus that government regulation of nursing homes, as it now functions, is not satisfactory because it allows too many substandard nursing homes to continue in operation.” Concerns included “neglect and abuse leading to premature death, permanent injury, increased disability, and unnecessary fear and suffering on the part of residents,” poor quality of life and lack of autonomy, and poor quality medical and nursing care.³⁷  The IOM committee emphasized that government regulation of nursing homes is warranted due to residents’ “large array of physical, functional, and mental disabilities,” limited opportunities for transfer among facilities, and inability to pay for care out-of-pocket.

Although the IOM recommendations led to changes adopted in the 1987 Nursing Home Reform Act, concerns about poor care quality and inadequate enforcement of federal standards continued. Between 1997 and 2010, the Government Accountability Office (GAO) issued more than 20 reports finding substandard care in many nursing homes; understatement of serious deficiencies by state surveyors; unenforced sanctions for harming residents; facilities cycling in and out of compliance; and inconsistent and ineffective federal oversight.³⁸  During the same period, the HHS Office of Inspector General issued reports critical of facility compliance and state and federal enforcement.³⁹  Recurring concerns include staffing levels, abuse and neglect, unmet resident needs, care quality, staff training and competency, and lack of integration between medical care and other services.⁴⁰ 

1. A Medicare skilled nursing facility (SNF) is an institution or distinct part that is primarily engaged in providing skilled nursing care and related services or rehabilitation services. 42 U.S.C § 1395i-3 (a). ↩︎
2. A Medicaid nursing facility (NF) is an institution or distinct part that is primarily engaged in providing skilled nursing care and related services, rehabilitation services, or health-related care and services on a regular basis to individuals who because of their mental or physical condition require institutional care and services above the level of room and board. 42 U.S.C. § 1396r (a). In addition, SNFs and NFs cannot be primarily for the care or treatment of mental illnesses and must have a transfer agreement in effect with one or more hospitals. Id.; 42 U.S.C. § 1395i-3 (a). ↩︎
3. The exception is state facilities, which are certified by the Secretary. 42 U.S.C § § 1395i-3 (g); 1396r (g). ↩︎
4. 42 U.S.C. § 1396b (a)(2)(D). ↩︎
5. 42 U.S.C. §§ 1395i-3 (g)(4); 1396r (g)(4). ↩︎
6. States must maintain a registry of abuse, neglect, and misappropriation findings. 42 U.S.C. §§ 1395i-3 (g)(1)(C); 1396r (g)(1)(C). ↩︎
7. 42 U.S.C. §§ 1395i-3 (g)(1)(B); 1396r (g)(1)(B). ↩︎
8. For Medicare SNFs, states recommend penalties to be imposed by the Secretary based on survey results, and the Secretary also can independently impose penalties based on survey results or other findings. 42 U.S.C. § 1395i-3 (h). For Medicaid NFs, state law must include the specified penalties, which are imposed by states based on survey results or other findings. 42 U.S.C. § 1396r (h). ↩︎
9. The facility must pay the temporary manager’s salary. If the immediate jeopardy is also substandard care quality, the state must notify each resident’s attending physician and the state facility administrator licensing board. 42 U.S.C. § § 1395i-3 (g)(5)(B), (C); 1396r (g)(5)(B),(C). ↩︎
10. A CMP can be reduced in two ways, though only one penalty reduction can be applied. A CMP is reduced by 35 percent if a facility waives its right to a hearing to dispute the penalty. Or, a CMP may be reduced by 50 percent if a facility self reports and promptly corrects a deficiency, except that CMPs for repeat deficiencies within the prior year and for deficiencies found to result in a pattern of harm or widespread harm, immediately jeopardy to resident health or safety or resident death may not be reduced. 42 U.S.C. § § 1395i-3 (h)(2)(B)(ii); 1396r (h)(3)(C)(ii). ↩︎
11. 42 U.S.C. § § 1395i-3 (g)(4); 1396r (g)(4). ↩︎
12. Institute of Medicine 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press at 5. https://doi.org/10.17226/646. ↩︎
13. Id. at 79. ↩︎
14. KFF, Key Issues in Long-Term Services and Supports Quality (Oct 2017), https://modern.kff.org/medicaid/issue-brief/key-issues-in-long-term-services-and-supports-quality/. ↩︎
15. Medicaid NFs are subject to additional preadmission screening and resident review (PASRR) requirements to ensure that individuals with serious mental illness or intellectual disabilities require a nursing facility level of services and whether any specialized services are required. PASRR reviews are conducted by the state mental health or developmental disability authorities upon admission and when there is a significant change in a resident’s condition. 42 U.S.C. § 1396r (e)(7). ↩︎
16. 81 Fed. Reg. 68688 (Oct. 4, 2016), https://www.govinfo.gov/content/pkg/FR-2016-10-04/pdf/2016-23503.pdf. ↩︎
17. 42 C.F.R. § 483.75. ↩︎
18. 42 C.F.R. § 483.85. ↩︎
19. 42 C.F.R. § 483.73. ↩︎
20. U.S. Gov’t Accountability Office, Infection Control Deficiencies Were Widespread and Persistent in Nursing Homes Prior to COVID-19 Pandemic (May 20, 2020), https://www.gao.gov/assets/710/707069.pdf. ↩︎
21. There must be a 12-month statewide average interval between standard surveys 42 U.S.C. § § 1395i-3 (g)(2)(A)(i), (iii)(I); 1396r (g)(2)(A)(i), (iii)(l). The Secretary conducts surveys of a representative sample of facilities in each state, within two months of state surveys, to validate state findings. If the Secretary finds that a state’s surveys were inadequate, the state is subject to sanctions, including a correction plan, training, and/or technical assistance for SNF survey inadequacies, and a reduction in federal matching funds for Medicaid administrative costs for a pattern of failure to identify deficiencies and training for NF survey deficiencies. 42 U.S.C. § § 1396r (g)(3)(C) 1395i-3 (g)(3)(C); 42 C.F.R. § 488.320. ↩︎
22. Substandard care quality includes one or more deficiencies in the following areas: treating residents with dignity and respect and in a manner that promotes quality of life; providing equal access to quality care regardless of condition severity or payment source; ensuring residents can freely exercise rights; not imposing physical or chemical restraints for discipline or convenience; reasonably accommodating resident needs and preferences in receiving services; allowing married residents to share a room with spouse; allowing residents to have roommate of their choice; providing written notice of change of room or roommate; allowing residents to choose activities, schedules, health care and providers; allowing residents to make choices about aspects of facility life significant to the resident; allowing residents to participate in community activities; allowing resident and family groups; allowing family or representatives of the resident to meet in the facility with other residents’ family or representatives; and providing a safe, clean, comfortable, and homelike environment. 42 C.F.R. § 488.301. ↩︎
23. 42 U.S.C. § § 1395i-3 (g)(2)(B); 1396r (g)(2)(B). ↩︎
24. 42 U.S.C. § § 1395i-3 (g)(2)(A)(iii)(II); 1396r (g)(2)(A)(iii)(ll). ↩︎
25. 42 U.S.C. § § 1395i-3 (g)(3); 1396r (g)(3). ↩︎
26. 42 U.S.C. § § 1395i-3 (g)(2)(A)(ii); 1396r (g)(2)(A)(ii). ↩︎
27. 42 U.S.C. § § 1395i-3 (g)(2)(B)(iii); 1396r (g)(2)(B)(iii). ↩︎
28. The Secretary also is responsible for providing survey team training. 42 U.S.C. § § 1395i-3 (g)(2)(C), (E)(iii); 1396r (g)(2)(C) (E)(iii). ↩︎
29. 42 C.F.R. § 488.314 (a)(2). ↩︎
30. 42 U.S.C. § § 1395i-3 (g)(2)(E)(i), (ii); 1396r (g)(2)(E)(i), (ii). ↩︎
31. 42 U.S.C. § § 1395i-3 (g)(5)(A); 1396r (g)(5)(A). ↩︎
32. 42 U.S.C. § § 1395i-3 (g)(5)(E); 1396r (g)(5)(E). ↩︎
33. Institute of Medicine 1986. Improving the Quality of Care in Nursing Homes. Washington, DC: The National Academies Press at 147. https://doi.org/10.17226/646. ↩︎
34. Id. at 242. ↩︎
35. See generally Id. ↩︎
36. Id. at 6. ↩︎
37. Id. at 3-4. ↩︎
38. KFF, Implementation of Affordable Care Act Provisions to Improve Nursing Home Transparency, Care Quality, and Abuse Prevention (Jan. 2013), https://modern.kff.org/medicaid/report/implementation-of-affordable-care-act-provisions-to-improve-nursing-home-transparency-care-quality-and-abuse-prevention/. ↩︎
39. Id. ↩︎
40. KFF, Key Issues in Long-Term Services and Supports Quality (Oct 2017), https://modern.kff.org/medicaid/issue-brief/key-issues-in-long-term-services-and-supports-quality/. ↩︎