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.

While it’s tempting to focus first on how rankings in this Scorecard compare to previous editions, we caution against reading too much into changes in rank, which is a reflection of your states' performance but also of other states' performance. Overall state rankings have shifted quite a bit compared with the 2020 Scorecard, likely due to both real changes on the ground as well as changes and additions we made to the framework - dimensions, indicators, and our methodology.  The new indicators focused on workforce, community integration and incorporating equity measurement help us to provide a more complete picture of state performance and that has resulted in some states moving up or down in rankings. We encourage you to look at your state values for the indicators we can track over time (there are 26) and see where things have improved or declined. 

Self-direction enrollment (35 states improved), Aging and Disability Resource Center/No Wrong Door (34 states improved), and home health hospitalizations (32 states improved - meaning their rate of hospitalizations for people getting home health declined).

Yes, almost all the indicators are about services or programs for adults – older adults and adults with physical disabilities. Only one indicator - self-direction enrollment - includes enrollment in some programs that serve children with disabilities. 

To inform our approach to scoring the data, we consulted with our National Advisory Panel and other researchers in the field as well as reviewed the literature about equity and disparities in LTSS. There is not one widely accepted way of factoring equity into performance measurement and ranking.  We devised this approach after considering the strengths and weaknesses of several alternatives. Every approach has limitations and tradeoffs. The tradeoffs in terms of advantages and disadvantages of this approach were the most acceptable to our team and our advisors – for now. We are optimistic that as more data about different groups are collected and become available and as this field advances, we will be able to improve our approach.  See Defining Equity in a LTSS System in the Scorecard for more discussion.

For the 9 indicators where we were able to get data broken out into different race/ethnicity groups, we looked at the values for each group and identified which had the worst outcomes/lowest performance. This could be a different group for each indicator. Then we compared that value to the national average value for all populations. States where all groups are performing above the national average scored better than states where one or more groups are below the national average.

Our scoring approach was developed to align with the vision statement that equity in a high performing LTSS system means that all groups perform well.  Strong performance in one or more large groups and for the overall population, with much weaker performance in other groups, is not equity. Poor performance across all groups is also not equity; it is just poor performance.

We were able to use the new approach for 9 indicators for which we had race/ethnicity data and it does provide a more comprehensive picture of how states are doing at serving all their resident for those indicators. This impacted state scores and ranks primarily in Safety and Quality dimension on indicators related safety and quality in nursing homes. There are clear differences in the experiences of different groups, at the national level and at the state level. This did impact scores to some degree for all states.

Our vision is that in a high performing LTSS system, all populations are served well and get what they need from the system. We want to be able to measure state performance at serving different populations such as LGBTQ+, sexuality, gender identity, disability status, income and we think it's important that states do this themselves. Unfortunately, for this edition of the Scorecard, there weren't data available in a consistent way across states for most of these groups. We were able to include race/ethnicity data for a subset of indicators as a first step. We hope to expand on this in future editions.

We wanted to be able to consider equity for every indicator and we hope to do more with every future edition. It is hard to find state data that are broken out by different groups. We added these data where we could, which was mostly for nursing home quality measures. State data about safety and quality are really only available right now about nursing home settings. There are not comparable data for safety & quality for HCBS, but CMS proposed some new reporting requirements in 2023 so this may change over the next few years. 

Performance Tiers are assigned at the dimension and overall levels. They are determined by where states fall along the continuum of cumulative values for all indicators in each dimension and the natural groupings that occur. They are intended to provide more contextual information about which states cluster are close together in terms of performance and where there are significant gaps in between groups of states even if they are ranked closely. For some dimensions, most states are clustered in the middle with very little difference in how they performed across indicators with a few states performing notably better or notably worse than the rest.

This is something to take into account and consider while interpreting the findings for specific indicators. Some LTSS system data are reported by states to the federal government about their own systems to meet federal requirements, such as program enrollment numbers or cost. Some data come directly from nursing homes and other providers. A few indicators’ data were collected through voluntary survey instruments, such one we asked state agency staff to complete about the functioning of their ADRC/NWD systems. Other data came from systematic reviews of state policy and programs by universities and other researchers. All the data were collected in standardized ways across states.

It is hard to attribute Scorecard values or ranks to any one thing; there are many factors things that impact state systems. But it is clear that COVID-19 had an impact on state systems, most significantly on indicators of supply and program enrollment. For example, adult day services supply declined across the country, due in large part to the closures that happened at the beginning of the pandemic. It will take time for that industry to rebuild. We also see the impact of state responses to COVID, such as the increase in enrollment in self-directed HCBS programs which is due at least in part to policy changes many states made at the beginning of the pandemic to make these programs more flexible and allow more types of family members to be paid to provide care. 

It is important to keep in mind that this Scorecard is about state performance. We believe all states were challenged and impacted by COVID in roughly the same ways, even if they experienced surges at different times. But there are still clear differences in state performance. We think there is a lot to learn from these differences, about how some states were better able to respond. The good news is that most states continued improve and make progress in at least a few areas between 2020-2022. If a state's performance declined overall, it could be at least partially due to the pandemic but likely other factors and policy choices as well.

Our criteria for selecting Innovation Points were:

• Only a few states have adopted but they have notable potential for scaling
• Policies are promising and programs are evidence-based
• Within the control of state government leaders to implement or adopt
• Designed explicitly to improve state performance in at least one of the dimensions

States are doing a wide range of innovative things and should be recognized and commended for that. We picked six for this edition of the Scorecard that we saw as standing out in terms of promise and/or evidence as well as the potential for scaling. We intend for the Innovation Points to change in future Scorecards. If these first six innovations are more widely adopted, they will likely become "core indicators" leaving room for us to call attention to different innovations in future editions.