Advancing Action, 2020: A State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers

Major Findings

September 24, 2020

States Made Modest Progress, but the Status Quo Dominates

State performance remained largely flat across most of the indicators. As demonstrated by the gray bars in Exhibit 4, among the 21 indicators for which performance could be measured over time, at least 60 percent of states (more than 30 states) showed little or no change for 15 indicators. With only incremental improvement across indicators at a time when demographic trends portend a rapid increase in LTSS demand, the Scorecard results suggest that many states may not be well prepared to offer affordable, accessible LTSS choices for individuals in the future.

On some elements of LTSS system performance, however, some states did pick up the pace of change. Specifically, at least 40 percent of states (more than 20 states) showed significant improvement in performance in five indicators:

  • Aging and Disability Resource Center (ADRC)/No Wrong Door (NWD) Functions
  • Medicaid LTSS Balance: Spending
  • Nursing Home Antipsychotic Use
  • Supporting Working Family Caregivers
  • Person- and Family-Centered Care

The Long-Term Care Insurance indicator was the only measure with 20 or more states showing a significant decline in performance.

"State performance remained largely flat across most of the indicators."

Even the Highest-Performing States Have Room for Improvement

Minnesota and Washington have been ranked either 1 or 2 in every edition of the Scorecard. In this fourth edition, Minnesota ranked 1, followed by Washington, Wisconsin, Oregon, and Vermont.

The four editions of the Scorecard each used slightly different methodologies and indicator sets, based primarily on data availability. Therefore, ranks are not directly comparable between years, but the results across all four Scorecard editions nevertheless indicate that Minnesota and Washington are consistently on top.

The leading states tend to do well across multiple dimensions; however, all states can improve on one or more of the five dimensions of performance. Only Minnesota scored in the top quartile across all five dimensions. In no case did a state score in the top 10 across all dimensions.

Exhibit 5 highlights that the top-performing states still have an opportunity to improve in specific indicators.

States with the Greatest Number of Improved Indicators

As shown in Exhibit 6, one-third of states (17) improved significantly in six or more of the 21 indicators for which trend data are available in this Scorecard. These states ranged from six in the top quartile of performance to two states that ranked in the bottom quartile, demonstrating that states at all levels of LTSS system performance can show significant improvement based on the specific elements of this Scorecard.

Among the 17 states having the greatest number of indicators with significant improvement, seven states showed significant improvement in six or more indicators and a decline in none. The other 10 states declined significantly in one or more indicators.

"The leading states tend to do well across multiple dimensions; however, all states can improve on one or more of the five dimensions of performance."

Top- and Bottom-Ranked States Have Remained Consistent

Although the indicator set has been different for each Scorecard, and ranks are not directly comparable, the same states have generally ranked near the top and near the bottom over the past decade. As shown in Exhibit 7, six states have consistently ranked in the top 10 and seven states have consistently ranked in the bottom 10 across all four editions of the Scorecard.

States Showed the Most Progress in Five Areas

ADRC/NWD Functions. In many states and communities, LTSS is fragmented and administered across multiple agencies and providers. The process of navigating a complex LTSS system can put unnecessary strain on those who need services and their families. To help address this, all states have created ADRCs that function as a single point of access or an NWD system to help streamline access to LTSS for older adults and people with disabilities.

ADRCs can serve as the gateway for helping individuals of all ages, abilities, and income levels and their families find and access LTSS, including light housekeeping, transportation, and respite care. An NWD system can provide counseling on options for individuals and families to help them make informed decisions based on individual circumstances.

However, the function and capabilities of ADRCs differ significantly among states, and so do their level of support for consumers and family caregivers. High-performing ADRCs can help individuals determine their LTSS needs, understand the full range of options available to them, and connect individuals to the services that are right for them. Nine of the top 10 states have fully operational NWD systems that conduct nursing facility preadmission screenings. The prescreening function helps expedite HCBS eligibility and avoid nursing home placement for those who wish to receive services in the community.

Of the 21 indicators for which performance could be measured over time, the ADRC/NWD indicator had the greatest number of states showing improvement. Thirty-three states demonstrated meaningful improvement, 13 of which improved by 11 percent or more (Alabama, Arizona, District of Columbia, Georgia, Hawaii, Indiana, Kentucky, Mississippi, New York, Oregon, South Dakota, Tennessee, and Wisconsin). The states with the most improvement focused on expanding training for person-centered counseling, implementing Lifespan respite grants,5 and strengthening their public outreach.

Medicaid LTSS Balance: Spending. Most adults ages 50 and older prefer to remain in their homes and communities for as long as possible.6 Appropriate Medicaid balance between nursing homes and HCBS helps ensure this. Half the states improved their spending to reflect consumer demand for more care support in their homes, and communities and nearly a quarter spend a majority on HCBS.

However, improvement was uneven across states. The spread between high- and low-performing states is widening as a result of both stronger performance among high-performing states and regression in some of the lowest-performing states.

Of the 13 states in the top quartile, eight saw significant improvement and only one saw a significant decline. By comparison, of the 12 states in the bottom quartile, four saw significant improvement but five saw significant decline.

Inappropriate Use of Antipsychotic Medication in Nursing Homes. For the second Scorecard in a row, most of the states experienced a significant decrease in the inappropriate use of antipsychotic medications in nursing homes. While this is a potentially promising trend, more research is needed to understand how improved performance was accomplished. Stakeholders should consider whether the change coincides with a higher rate of diagnosis for schizophrenia among the population ages 65 and older, the impact of staff training and staffing ratios, and how occupancy rates and resident population mix may impact this measure.

Supporting Working Family Caregivers. The Scorecard also found significant progress in the enactment of public policies that support working family caregivers. More states and localities are recognizing the competing pressures on family caregivers and offering flexibility to use accrued sick time for family caregiving responsibilities. States are also enacting paid family leave programs to ensure that family caregivers do not risk losing their paycheck when close family members need help. Since the last Scorecard, the number of states with paid family leave programs tripled from three states to nine states.

Person- and Family-Centered Care. Most states (29) improved significantly on this indicator, which measures performance on three types of policies: (a) state policies on financial protection for spouses of Medicaid beneficiaries who receive HCBS; (b) assessment of family caregivers’ own needs; and (c) enactment of the Caregiver Advise, Record, Enable (CARE) Act. The biggest factor driving improvement was the number of states conducting assessments of family caregivers for their own health needs and well-being. Twenty-four states saw significant improvement in this area, bringing the total number of states conducting family caregiver assessments to 41.

States also continue to make strong progress in enacting the CARE Act. Nine additional states have enacted the CARE Act since 2016, bringing the total to 41 states.7

States Showed a Significant Decline in Long-Term Care Insurance Policies

Everyone faces a risk, but not a certainty, of needing LTSS. A 2015 study using microsimulation modeling estimated that about 52 percent of people turning age 65 would develop needs that require LTSS.8 Long-term care insurance (LTCI) can provide a valuable benefit for those who have it. Most LTCI covers nursing home, assisted living, and in-home care services. Having LTCI also gives people more control over the care they receive and in the setting of their choice, as well as services to maintain independence. In 2018, LTCI carriers paid $10.3 billion in claims benefits, up from $6.6 billion in 2012 (a 56 percent increase).9

Despite the benefits and likelihood that more than half of Americans will need LTSS at some point in their lives, relatively few adults ages 40 and older purchase LTCI, and that number is steadily declining. The Scorecard found a decrease of 430,448 policies (6 percent) between 2015 and 2018.

Exhibit 8 shows a comparison by state of the number of active, private LTCI policies in effect in 2015 versus 2018 for people ages 40 and older. The average coverage rate in 2018 for the top five states (District of Columbia, Hawaii, Nebraska, North Dakota, and South Dakota) is 114 LTCI policies per 1,000, compared with 123 policies in 2015—a 7.3 percent decline. In contrast, the average coverage rate in 2018 for the bottom five performing states (Alaska, Arkansas, Idaho, Nevada, and West Virginia) is 25 policies per 1,000 people, compared with 28 policies in 2015—a 10.7 percent decline. The national average in 2018 is just 43 policies per 1,000 people ages 40 and older, compared with 47 policies in 2015—an 8.5 percent decline.

This downward trend is consistent across nearly all states. As a result, LTCI plays a limited role in LTSS financing, accounting for just 4 percent of LTSS national spending in 2017.10 Several factors contribute to the low rate of LTCI, including the complexity of LTCI policies, high costs and spikes in premiums, and a common misunderstanding that Medicare or Medigap will cover LTSS needs.

Recently, states have taken steps to improve this product. One promising example is Washington state, which established a public long-term benefit in 2019 with the enactment of the Long-Term Care Trust Act. The law’s public long-term care benefit provides $36,500 coverage for all workers older than age 18. Financed through payroll deductions for all workers, the benefit could be used to pay for a variety of LTSS, including in-home care, nursing home care, and respite.11

Affordable and Accessible Housing Remains a Significant Unmet Need

Housing is a major factor in overall health and well-being. Individuals who are overburdened with housing costs have less disposable income to pay for their health care needs or other services, like transportation, which could help them stay connected to the community or maintain employment. The lack of safe, suitable, affordable housing can prevent individuals from being able to remain in their communities as their needs for LTSS grow.

As shown in Exhibit 9, although there has been a small increase in subsidized housing units nationwide, need continues to outpace supply. There are 18.9 million very low-income renter households across the country and only 8.6 million potentially available subsidized housing units. Very low-income is defined as family income that is less than or equal to 50 percent of the median family income in a metropolitan area. Moreover, the supply of affordable housing is not the only factor impacting individuals with substantial LTSS needs. Housing must also be accessible and coupled with supportive community services to meet the needs of people with physical disabilities.

Two New Indicators

Adult Day Services Supply (Choice of Setting and Provider Dimension). 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 older12). 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.”13

HCBS Quality Benchmarking (Quality of Life and Quality of Care Dimension). 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. This edition of the Scorecard begins to address this gap by introducing an HCBS Quality Cross-State Benchmarking Capability composite to assess states on their utilization of nationally available tools that enable state-to-state comparisons. Evidence suggests that robust and accurate quality reporting is a precursor to improving quality outcomes.14 Unlike state-specific quality monitoring tools, the 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 country.

Four quality monitoring tools were identified for inclusion in the composite measure:

  1. National Core Indicators—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)

5 Lifespan respite care programs are coordinated systems of accessible, community-based respite care services for family caregivers of children and adults of all ages with special needs. In 2006, Congress passed the Lifespan Respite Care Act, which authorized competitive grants to ADRCs in collaboration with public or private nonprofit state respite coalition organizations to make quality respite available and accessible to family caregivers regardless of age or disability. Lifespan respite care programs reduce duplication of effort and assist in the development of respite care infrastructures at the state and local levels. As of 2017, competitive grants of up to $200,000 each were awarded to eligible agencies in 37 states and the District of Columbia.

6 Joanne Binette and Kerri Vasold, “2018 Home and Community Preferences: A National Survey of Adults Ages 18-Plus,” AARP Research, Washington, DC, July 2019,

7 Puerto Rico and the US Virgin Islands have also enacted the CARE Act.

8 Melissa Favreault and Judith Dey, “Long-Term Services and Supports for Older Americans: Risks and Financing Research Brief,” US Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation, Washington, DC, 2015,

9 “Long Term Care Insurance Industry Paid $10.3 Billion in Claims in 2018,” Facts, Statistics and Relevant Information, January 14, 2019,

10 AARP Public Policy Institute estimates are based on data from 2017 private long-term care insurance claims from the American Association for Long-Term Care Insurance, “Long Term Care Insurance Industry Paid $10.3 Billion in Claims in 2018,” Facts, Statistics and Relevant Information, January 14, 2019, As cited in Hado and Komisar, “Long-Term Services and Supports.”

11 “Get the Facts,” Washingtonians for a Responsible Future, January 23, 2020,

12 Jessica Penn Lendon and Vincent Rome, “Variation in Adult Day Services Center Participant Characteristics, by Center Ownership: United States, 2016,” NCHS Data Brief 296, US Department of Health and Human Services, Centers for Disease Control and Prevention, National Center for Health Statistics, Hyattsville, MD, February 2018,

13 Ibid, 6.

14 Agency for Healthcare Research and Quality, “Public Reporting as a Quality Improvement Strategy: A Systematic Review of the Multiple Pathways Public Reporting May Influence Quality of Health Care,” AHRQ, Rockville, MD, August 17, 2011,


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