Frequently Asked Questions

Long-term services and supports (LTSS) may involve, but are distinct from, medical care for older people and adults with disabilities. Definitions of the term vary, but in this report, we define LTSS as: assistance with activities of daily living and instrumental activities of daily living provided to older adults and other adults with physical disabilities who cannot perform these activities on their own due to a physical, cognitive, or chronic health condition that is expected to continue for an extended period, typically 90 days or more.

LTSS include human assistance, supervision, cueing and standby assistance, assistive technologies and devices and environmental modifications, health maintenance tasks (e.g., medication management), information, and care and service coordination for people who live in their own home, a residential setting, or a nursing facility. LTSS also include supports provided to family members and other unpaid caregivers.

Individuals with LTSS needs may also have chronic conditions that require health or medical services. In a high-performing system, LTSS are coordinated with housing, transportation, and health/medical services, especially during periods of transition among acute, post-acute, and other settings.

For the purpose of this Scorecard, people whose need for LTSS arises from intellectual disabilities (ID) or chronic mental illness (CMI) are not included in our assessment of state performance. The LTSS needs for these populations are substantively different from the LTSS needs of older people and adults with physical disabilities. Including services specific to the ID and CMI populations would have required substantial additional data collection, which was beyond the scope of this project.

Our nation is rapidly aging. Individuals are living longer and there has also been an increase in the number of people living with a disability.  In the United States, 10,000 people are turning 65 every day and more and more of them will live into their late 80s—an age that is a barometer for the potential demand for LTSS. The probability of having a disability increases with age.

We know older people and adults with disabilities want to remain in their homes and communities for as long as possible. They want to receive services and supports in the least restrictive setting and be fully engaged and integrated in community activities. However, systems will need to evolve to better align with these preferences.  States and communities must adapt and address issues around LTSS, transportation, and affordable and accessible housing.  While there has been some progress in modernizing the delivery of LTSS, the urgency that we act now and expedite the pace of change continues to grow.

In addition, family and other unpaid caregivers (e.g., close friends, neighbors, etc.) are the bedrock of any state LTSS system, providing roughly $470 billion in unpaid care.  Any LTSS system should ensure that caregivers have access to the support they need.  The Scorecard highlights essential policies that can better support caregivers.

The Long-term Services and Supports State Scorecard (Scorecard) is a unique ranking and policy tool designed to inform people—ranging from policy makers and other stakeholders to members of the public—about the extent to which states have developed LTSS systems to meet the needs of older adults (ages 65 and older), adults with physical disabilities, and family caregivers. The Scorecard website includes performance rankings of the 50 states (and the District of Columbia)—both for overall performance and within five different categories, called dimensions: Affordability and Access, Choice of Setting and Provider, Quality of Life and Quality of Care, Support for Family Caregivers, and Effective Transitions. The rankings are derived from 26 indicators that measure state performance.

It is easy to interact with Scorecard data using the map and tools, to drill into indicator information for a single state or compare state performance on selected indicators. In addition to the state rankings, the Scorecard website includes a series of papers and other resources on promising practices. These briefs describe concrete examples of programs and policies from states that have performed well in a specific area. Various strategies, practices, and tools states can adopt to improve the lives and well-being for older adults, people with physical disabilities, and their family caregivers. Additional publications, including case studies, and other resources are also available on the website.

Policy makers, stakeholders, and consumers can use the Scorecard to:

• Understand the goals of a high-performing LTSS system
• Identify opportunities for improvement
• Establish priorities for system investments
• Set targets for performance improvement
• Assess progress in closing performance gaps

No, it does not.  Data collection for the Scorecard was completed in 2019, and so the measures included in the 2020 Scorecard paint a picture of comprehensive system performance just before the outbreak began. Although it might be tempting to draw inferences or assumptions about COVID-19 preparedness or response from the LTSS Scorecard, it is not possible to do so at this time.

The COVID-19 pandemic has put a national spotlight on one particular LTSS setting— nursing homes, however, most people receiving LTSS are not in nursing homes.  The LTSS system encompasses and array of services and supports across a variety of different settings where LTSS recipients can receive supportive services—nursing homes are just one piece of the LTSS system. 

A handful of states in the top quartile of LTSS system performance achieved this status based on strong performance across a broad range of measures, with particular strength in dimensions that are unrelated to the COVID-19 outbreak: Affordability and Access,  Choice of Setting and Provider, and Support for Family Caregivers. If it were possible to include COVID-19 preparedness or response measures in the Scorecard, they would reside the Quality of Life and Quality of Care dimension. Notably, the high-performing states hit hardest by COVID-19 are not strongest on the Quality of Life and Quality of Care dimension.

Policies at the state level play a huge role in shaping the LTSS system.  States rely heavily on federal funding—including Medicaid and the Older Americans Act—to finance LTSS, but these programs are administered at the state level and, consequently, vary widely. Nursing home care, for example, is a mandatory benefit under Medicaid and is provided by all states.  But states have considerable flexibility to set the program rules that determine how many state residents are eligible for Medicaid assistance with the cost of nursing home care.  States also have an array of options in Medicaid for providing home- and community-based alternatives to nursing home care.  

Beyond Medicaid, states’ choices and investments also affect the design and delivery of LTSS, including  supplementing access to affordable services through state-funded homecare programs, consumer information, education, and outreach for aging services, respite services and other supports for family caregivers, the enforcement of federal nursing home quality standards, the regulation of private long-term care insurance, and long-term care workforce development strategies.  States’ priorities and choices shape LTSS systems and how well they work for consumers and family caregivers.  The Scorecard ranks state performance to provide insight into what’s working and how states can do better.

To rank states, we developed five dimensions of LTSS system performance and, within each dimension, selected indicators which would meaningfully represent state performance in each dimension.  We created a National Advisory Panel to help ensure that the categories correspond to the issues that matter to consumers and their families, and that are sensible and comprehensive.  The five dimensions of LTSS system performance are: (1) Affordability and Access, (2) Choice of Setting and Provider, (3) Quality of Life and Quality of Care, (4) Support for Family Caregivers, and (5) Effective Transitions.  The expert panel provided input on the dimensions, the measures to be included in each dimension category, and the data sources used. 

The rankings provide a meaningful comparison of state performance.  However, information on some important aspects of LTSS is not available.  The Quality of Life and Quality of Care dimension (comprised of 4 indicators) includes employment of people with disabilities living in the community, two indicators of quality in nursing homes, and a measure of the capability for cross-state benchmarking of HCBS quality measures.  This dimension has a long-standing gap in HCBS quality measures that are comparable across states, as well as quality of life other than employment. Because of these gaps, the entire quality dimension is given only half weight in terms of assessing overall LTSS system performance, not because it is any less important, but because we consider it to be incomplete due to a lack of available data to measure multiple important aspects of quality of life and quality of care in institutional and community- based settings. 

The Support for Family Caregivers dimension is calculated differently.  The dimension score is a single composite across all 12 policy areas that are grouped into four broad categories, and the dimension rank is based on the total dimension score. 

For more information, see the Methodology section of the website.

The Scorecard strives to present a complete and comprehensive assessment of LTSS system performance across five key characteristics; but the Scorecard can only be as complete and comprehensive as the data that are available to measure performance, and data availability continues to fall short of where it ought to be.  From the beginning of the Scorecard project, a key finding has been that better data are needed to assess state LTSS system performance.  In the first Scorecard, released in September 2011, six specific data gaps were identified, and others have subsequently been noted. 

Data gaps and data quality issues continue to make it difficult to completely and comprehensively measure LTSS system performance.  Improving consistent state-level data collection is a critical need,particularly in the domains of quality of life and quality of care.  The main idea of a Scorecard is that measurement, tracking, transparency, and accountability are essential to sustained performance.  Gaps in data are not just gaps in measurement: they will eventually manifest as gaps in system performance as well.  Data gaps continue to be the case in this Scorecard.  For example, better quality of care data are still needed, such as prevention of infection in all LTSS settings (e.g., nursing homes, assisted living, adult day care, and home care).  

The Scorecard offers an opportunity to understand state and national data, analyze trends, and promising practices that can inform evidence-based decisions. The Scorecard can be a useful resource to assess policies and practices that may be overdue for critical reexamination. It can also be used as a catalyst to spark conversation and action to address data gaps and improve the current LTSS system.

The Scorecard reports on the state of LTSS prior to the COVID-19 outbreak and therefore COVID-19 metrics and nursing home death rates are not included in this Scorecard.  Data for this Scorecard were collected prior to the pandemic’s impact on LTSS.  CMS and researchers are in the early stages of collecting and analyzing nursing home data on COVID-19 cases and deaths and identify factors contributing to nursing home outbreaks. 

The prevalence of COVID-19 cases, both generally and in congregate LTSS settings in particular, depends on a number of public health and societal factors, as well as the rate of community spread. Where there is significant community spread of COVID-19, there will be a significant impact on the LTSS system. Until more is known about factors contributing to nursing home deaths, a correlation cannot be drawn between nursing home deaths and Scorecard rankings. 

The Scorecard addresses the whole LTSS system which includes two nursing home quality metrics, nursing home pressure sores and inappropriate use of antipsychotic medication; however, the Scorecard quality dimension has long-standing gaps. Because of these gaps, the entire quality dimension is given only half weight in terms of assessing overall LTSS system performance.  This Scorecard helps amplify the continuing need for more and better data to address the growing challenges of LTSS, including measures of quality.  Some of the key challenges are nursing homes and other congregate care settings (e.g., assisted living, adult foster care, group homes, independent living).

The highest-performing states—ranked in the top quartile overall—are those that perform relatively well across the five dimensions of LTSS system performance.

The top performing states tend to rank high across the board.  What the rankings don’t tell us is whether the state systems at the top of the Scorecard rankings deliver the outcomes we want and expect for people who need LTSS and their families.  There is no absolute standard—for affordability or quality, for example—against which state performance is compared.

The lowest-performing states—ranked in the bottom quartile overall—are those that perform relatively poorly across the five dimensions of LTSS system performance.

Wide variation exists within all dimensions and on most indicators, with low-performing states being markedly different from those that score high.

It is tempting to compare the four Scorecards (2011, 2014, 2017, and 2020) to see whether a state has risen through the ranks (or perhaps fallen).  Unfortunately, due to changes in data and methods, the Scorecard rankings cannot be compared in this way. The best way to tell if your state is improving or declining in performance is to assess change in the indicators that are measured consistently over time.  For 21 of the 26 indicators in the current Scorecard, baseline data are available to measure change over time. See the list in Table B3.1 in Measuring Change Over Time in the Methodology section of the website.  Detailed state-level performance data showing state-level change over time are available in the Exhibit A Indicator Data tables available in the Appendices.

One thing to note is that we report improvement or decline in an indicator only if a measure improved or declined by 10 percent or more. In some cases, another threshold was used. For more information about how the thresholds were calculated, see Measuring Change Over Time in the Methodology section of the website.

For those Scorecard readers who want to assess changes in rank, please note that ranks are not directly comparable between years. There were some changes in the indicators used (i.e., new indicators were added, some indicators were dropped, and there were methodological changes in some indicators, changing the computation of dimension and overall ranks).

State performance remained largely flat across most of the indicators where performance could be measured over time could be shown (21 of the 26 indicators). Between the 2017 Scorecard and the current Scorecard at least 60 percent of states (30 states) showed little or no change for 15 of the 21 indicators.  On some elements of LTSS system performance, however, some states did pick up the pace of change.  At least 40 percent of states (more than 20 states) showed significant improvement in performance in five indicators: Aging and Disability Resource Center/No Wrong Door (33 states); Medicaid LTSS Balance: Spending (25 states); Nursing Home Antipsychotic Use (28 states); Supporting Working Family Caregivers (23 states); and Person- and Family-Centered Care (29 states).

All states have opportunities to improve LTSS system performance.  Even the highest ranked states can do better than they do today.  States can use the Scorecard as a starting point for identifying opportunities for improvement and setting program and policy priorities.  Since relatively few states improved in the Access and Affordability dimension beyond the Aging and Disability Resource Center/No Wrong Door indicator, this may be an appropriate area of focus for many states. 

To increase the enrollment of low-income people who need LTSS, state policymakers may want to consider reforms to Medicaid eligibility policies. States may also want to consider expanding outreach to populations that may be eligible for, but not enrolled in Medicaid, including people who could benefit from community-based LTSS, for example.  These eligibility expansion and outreach activities have the potential to improve state performance on several Scorecard indicators.  Other reforms, however, also have the potential to improve performance on the Access and Affordability indicators.  For example, states that create better HCBS systems to reach people who may need only relatively modest home care to remain independent in the community may achieve higher rates of coverage in Medicaid.   

The Scorecard provides suggested approaches that stakeholders can take to advance action in each of the five dimensions.  In addition, one goal of the Scorecard is to shed light on high-performing states so other states can learn from their strategies and successes.  See the Key Findings by Dimension section of the Scorecard for more detail.  On the Scorecard website, states can find a variety of reports – case studies, promising practices, emerging innovations, and others—that describe the strategies used and outcomes achieved in several high-performing and fast-improving states.

We selected valid, objective and reliable indicators to provide an overview of state performance in each dimension.  Most of the indicators are derived from federal government administrative databases or surveys.  These sources are considered among the most reliable because they are subject to some oversight by federal program administrators (who use the administrative data for program purposes) and social scientists who assess survey data for accuracy.  The methods used to combine the data into composites and rankings are simple and transparent.  We convened a National Advisory Panel of experts in LTSS to provide input on the indicators and the methods used.

For each indicator, the most recently available data as of December 2019 are used. The data reporting years range from 2016 to 2019, with most indicators relying on 2018—19 data. For more information, see the State LTSS Scorecard Measuring Change Over Time and Detailed Indicator Descriptions in the Methodology section of the website.

The 2020 Scorecard relies mostly on the same indicators used in 2017.  However, some indicators had to be replaced (because data were no longer available), two new indicators were added, and six indicators had to be revised (because of revised definitions, owing to changes in data sources or data availability).  Two new policies were also added to the Support for Family Caregivers dimension. The major changes in the 2020 Scorecard affect four dimensions:  Affordability and Access, Choice of Setting and Provider, Quality of Life and Quality of Care, and Effective Transitions. 

Affordability and Access Dimension—includes two revised indicators:

• Private Long-Term Care Insurance Policies in Effect per 1,000 Population Ages 40+—revised definition due to a change in data availability. 
• Estimated Medicaid LTSS Users per 100 Population with ADL Disability (People with Disabilities with Medicaid LTSS)—revised definition due to a change in data availability.

Choice of Setting and Provider Dimension—includes one new indicator and one replaced indicator:

• Adult Day Services Total Licensed Capacity per 10,000 Population Ages 65+ (Adult Day Services Supply)—is a new indicator that measures the total licensed capacity of adult day service providers compared with the population ages 65 and older.  The addition of the adult day supply measure brings the number of indicators in the Choice of Setting and Provider dimension to seven indicators.
• Estimated Percentage of Medicaid Aged/Disabled LTSS Users Receiving HCBS (Medicaid Balance: Users)—is a replaced indicator due to a change in data availability.  The measure is an estimate, among older people and people with physical disabilities who received Medicaid LTSS during the year, of the percentage that received services in their home or community (as opposed to a nursing home).  This measure compares the percentage of Medicaid LTSS recipients who are receiving HCBS.

Quality of Life and Quality of Care Dimension—includes one new indicator and one revised indicator:

• Home-and Community-Based Services (HCBS) Quality Cross-State Benchmarking Capability (HCBS Quality Benchmarking)—is a new indicator that scores states on their utilization of four standardized quality monitoring tools that can be used to benchmark HCBS quality and make cross-state comparisons.  The four monitoring tools include:

1)      National Core Indicator—Aging and Disabilities (NCI-AD)

2)      Consumer Assessment of Healthcare Providers and Systems—Home and Community-Based Services Survey (HCBS-CAHPS)

3)      National Committee for Quality Assurance (NCQA) Statewide Accreditation

4)      Behavioral Risk Factor Surveillance System—Emotional Support and Quality of Life Support Module (BRFSS-ES-QOL)

• Percentage of High-Risk Nursing Home Residents with Pressure Sores—revised definition due to a change in the data source.

Effective Transitions Dimension—includes one replaced indicator and three revised indicators:

• Percentage of Short-Stay Residents who were Successfully Discharges to the Community (Successful Discharges to Community)—is a replaced indicator due to a change in data availability.  This indicator measures the proportion of Medicare beneficiaries ages 18+, who successfully discharged to the community from a post-acute care (PAC) skilled nursing facility (SNF) and had no unplanned rehospitalizations and no death in the 31 days following discharge.  Community is defined as home or self-care, with or without home health services.
  • Percentage of Nursing Home Residents with Low Care Needs—is a revised indicator due to a change is the data source.
  • Percentage of Home Health Patients with a Hospital Admission—is a revised indicator due to a change in the data source.
  • Percentage of Nursing Home Residents with One or More Potentially Burdensome Transitions at End of Life—is a revised indicator due to a change in the data source.

For more information on changes to the data and definitions, see the methodology section on the LTSS Scorecard website.

This indicator is one of several indicators that measure the capacity of various types of HCBS.  In order for people with LTSS needs to have a choice of setting or provider, options must be available.  This indicator measures the total licensed capacity of adult day service providers compared with the population ages 65 and older (about two-thirds of adult day services users are 65 and older).  The National Center for Health Statistics defines an adult day service center as “a community-based center, generally open on weekdays, that provides long-term care services, including structured activities, health monitoring, socialization, and assistance with ADLs (activities of daily living) to adults with disabilities.”

High-performing LTSS systems should include the ability to benchmark results against other states; however, comparable cross-state measurement of HCBS quality is a long-standing gap in the Scorecard.  To address this gap, the 2020 Scorecard developed an HCBS quality cross-state benchmarking capability composite indicator to assess states on their utilization of nationally available to that enable state-to-state comparisons.  Evidence suggests that robust and accurate quality reporting is a precursor to improving quality outcomes.  Unlike state-specific quality monitoring tools, standardized tools enable direct comparison across states.  Quality monitoring programs that include the ability to benchmark and make cross-state comparisons offer the best opportunity to identify promising practices, detect deficiencies, and effectively monitor HCBS quality across the county.

The lack of affordable and accessible housing is a significant barrier to community integration for people who use LTSS.  To assess the gaps in the availability of affordable housing across states, the 2020 Scorecard includes a measure of subsidized housing opportunities. The indicator is an overall measure of the statewide availability of affordable housing; it is not limited to people who need LTSS or who may be at risk of a nursing home admission.  However, states can use the measure – together with the other indicators in this dimension, including assisted living units – to assess the overall supply of community residential housing options for people who may be eligible for HCBS under Medicaid, for example.  Since assisted living is often unaffordable to people with low or modest incomes, subsidized housing plays a large role for older adults and people with physical disabilities.  More than half of all subsidized households are headed by a person aged 62 or older or by a person with a disability.

In recognition of the need for housing related services, states increasingly are providing housing-related services under Medicaid (such as tenancy services for community-based LTSS Medicaid beneficiaries) and Medicaid agencies are partnering with housing agencies to expand housing development opportunities for HCBS beneficiaries. Without an adequate supply of subsidized housing units, states are likely to have difficulty finding housing for low-income elderly and people with disabilities who do not own a home.

The LTSS Scorecard was released in 2011, and updated in 2014, 2017, and 2020.  The goal is to update the Scorecard every two to three years.

Amanda Davis, AARP, 202-434-2560, adavis@aarp.org, media@aarp.org, @AARPMedia

Rachel Griffith, The SCAN Foundation, 202-868-4824, rgriffith@messagepartnerspr.com

Bethanne Fox, The Commonwealth Fund, 212-606-3853, bf@cmwf.org