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

Key Findings by Dimension

September 24, 2020

DIMENSION 1 Affordability and Access

This dimension includes six indicators. These indicators for measuring affordability and access and the key findings are listed below. Exhibit 10 illustrates states’ rankings by quartile in this dimension.

INDICATOR 1: Nursing Home Cost

  • KEY FINDING. The cost of nursing home care is unaffordable for middle-income Americans in every state. The average annual per person cost of nursing home care is more than $100,000 a year in a private room, about 2.5 times the typical income for an older family. Even in the five most affordable states (Kansas, Missouri, Oklahoma, Texas, and Utah), nursing home costs would consume 176 percent of the income of the typical older family. When the cost of care exceeds median income by that much, many people with LTSS needs will ultimately exhaust their life savings and eventually turn to the Medicaid public safety net for assistance.

INDICATOR 2: Home Care Cost

  • KEY FINDING. Home care services continue to be much more cost-effective than nursing home care for individuals and families. On average, the annual per person cost of home care is roughly $35,000 a year (for 30 hours of weekly care at $23 per hour), compared with an average cost of $102,000 for nursing home care. Despite being relatively more affordable, home care still exceeds what many older households can afford to pay. Nationally, home care costs would consume more than three-quarters (80 percent) of the entire income of the typical, older middle-income family.

INDICATOR 3: Long-Term Care Insurance

  • KEY FINDING. Despite the high cost and growing demand for LTSS, relatively few adults ages 40 and older purchase LTCI, and that number is declining. There was a decrease of 430,448 policies (6 percent) between 2015 and 2018. This downward trend is consistent across nearly all states.

INDICATOR 4: Low-Income People with Disabilities with Medicaid

  • KEY FINDING. Eight states (Connecticut, Indiana, Louisiana, Maryland, Montana, North Dakota, Pennsylvania, and Rhode Island) significantly expanded their Medicaid safety net to cover more low-income adults with disabilities. As shown in Exhibit 11, Medicaid expansion appears to be a driving force in these results. For most states that expanded Medicaid benefits, expansion went into effect in calendar year 2014. Another group of five states expanded in 2015–16. These five “late expansion” states accounted for four of the eight states that showed significant improvement. Of the 19 states that had not expanded Medicaid by the end of 2018, none saw significant improvement and only 1 state (Maine) was in the top quartile. Sixteen of the 19 (84 percent) non-expansion states are below the national average.15

INDICATOR 5: People with Disabilities with Medicaid LTSS

  • KEY FINDING. Across the country, there is overall improvement in the percentage of Medicaid consumers with self-care needs (defined as having difficulty bathing, dressing, or getting around inside the home) who receive Medicaid LTSS. Seven states significantly improved. However, the gap between the highest-performing states and lowest-performing states widened. There was roughly a fourfold difference between the average performance of the top five states and the bottom five states. The top five states had an average of 86 Medicaid LTSS participants for every 100 people with self-care disabilities. The average in the bottom five was just 22 participants.


  • KEY FINDING. Two-thirds of states improved their ADRC or NWD access points to help consumers and family caregivers navigate LTSS options. Overall, the greatest improvement occurred with addressing target populations, streamlined eligibility for public programs, and person-centered counseling. High-performing states are also building strong collaborative partnerships between state aging and disability and state Medicaid agencies.

DIMENSION 2 Choice of Setting and Provider

This dimension includes seven indicators, including a new Adult Day Services Supply indicator that measures total licensed capacity of adult day services in each state. These indicators for measuring choice of setting and provider and the key findings are listed below. Exhibit 12 illustrates states’ rankings by quartile in this dimension.

INDICATOR 1: Percentage of Medicaid- and State-Funded LTSS Spending Going to HCBS for Older People and Adults with Physical Disabilities (Medicaid LTSS Balance: Spending)

  • KEY FINDING. Given the strong preference of consumers to receive care in their own homes and communities as long as possible, it is encouraging that half of states improved the balance of Medicaid and state LTSS spending for older adults and people with physical disabilities toward more HCBS. Thirteen of those states had a significant shift of over 20 percent. Now, almost a quarter (12) of states spend the majority of Medicaid and state LTSS funding for older people and adults with physical disabilities on HCBS (up from seven states in 2009). The range of performance among states, however, varies dramatically—from a high of 73.5 percent in New Mexico to a low of 13.5 percent in Kentucky.
"Almost one-quarter of states (12) spend the majority of Medicaid funding on HCBS (up from 7 states in 2009)."

INDICATOR 2: Estimated Percentage of Medicaid Aged/Disabled LTSS Users Receiving HCBS (Medicaid LTSS Balance: Users)

  • KEY FINDING. Since most people prefer to receive HCBS rather than nursing home care, this measure is also a reflection of whether a state offers the care people want in the setting they prefer. Twelve states made significant improvement in the percentage of Medicaid beneficiaries who receive services in home- and community-based settings compared with nursing homes. The percentage between high- and low-performing states varied dramatically on this indicator. Among the top five states, 81 percent of Medicaid beneficiaries receive services in their homes and communities. However, only 34 percent of Medicaid beneficiaries in the bottom five states are receiving services in their home or community. Unlike the indicator on Medicaid LTSS balanced spending, this measure compares the percentage of people, not money, going toward HCBS.

INDICATOR 3: Self-Direction

  • KEY FINDING. In 2019, there were more than 1.2 million participants in public programs who were self-directing their own LTSS. California, the leading state in this area in the previous Scorecard, is the top-ranking state again, accounting for nearly half (49 percent) of the national total, but other states are catching up. The number of people enrolled in “self-directed” LTSS programs has grown by almost 500,000 (67 percent increase) since the first edition of the Scorecard. Minnesota and New York are two states to recently improve on this measure. In Minnesota, the proportion of people self-directing their LTSS services has doubled since 2016. In New York, the rate of self-direction has more than tripled since 2016, catapulting New York from a mid-tier state to the top 10.

INDICATOR 4: Home Health Aide Supply

  • KEY FINDING. The supply of direct care workers remains uneven among states. Home health aides can provide a range of services, from administering medication to helping with bathing and dressing, that support independent living and can provide family caregivers a break. The majority of states (43) had no significant change in home health aide or personal care worker supply. In five states, the supply of direct care workers increased by 20 percent or more, while three states reported a significant decline.

INDICATOR 5: Assisted Living Supply

  • KEY FINDING. The supply of assisted living and residential care units varies drastically, from a high of 102 units per 1,000 people ages 75 and older (North Dakota) to a low of 20 units (Louisiana). The bottom five states averaged just 24 units per 1,000 people ages 75 and older, while the top five states averaged 93 units, a fourfold difference. While some Medicaid or state-funded programs cover assisted living and residential care, most residents pay out of pocket. Costs differ between location and individual communities, but the median cost is nearly $50,000 a year.

INDICATOR 6: Adult Day Services Supply (NEW)

  • KEY FINDING. Access to adult day services ranges widely and may be an issue depending on where an individual lives. The total licensed capacity of adult day service providers (compared to the population ages 65 and older) ranges from a high of 171 in California to just six in Oregon and Utah.

INDICATOR 7: Subsidized Housing Opportunities

  • KEY FINDING. Nationally, there are 18.9 million very low-income renter households and only 8.6 million potentially available subsidized housing opportunities (including vouchers and place-based housing units). Only nine states have significantly increased the percentage of subsidized housing opportunities since 2015. Nationally, the small increase of 650,000 subsidized housing units since 2015 continues to fall short of current and future needs.

DIMENSION 3 Quality of Life and Quality of Care

This dimension includes four indicators. A new HCBS Quality Benchmarking indicator scores states on their level of adoption of standardized tools that can be used to provide cross-state comparison to monitor HCBS quality. The indicators for measuring quality of life and quality of care and the key findings are listed below. Exhibit 13 illustrates states’ rankings by quartile in this dimension.

Due to persistent data gaps including in HCBS quality outcomes, quality of life other than employment, and staffing, this dimension is considered to be an incomplete measurement of the quality of life and quality of care construct. It therefore receives only one-half of the weight of the other four dimensions in determining states’ overall ranks on LTSS system performance. Going forward there is a need for robust, standardized, and comparable data on quality of life, quality of care, and safety across all institutional and community settings.

INDICATOR 1: People with Disabilities’ Rate of Employment

  • KEY FINDING. For adults with disabilities, the ability to work is an important factor in quality of life. Not only does employment provide income, but working often gives adults a sense of purpose, self-worth, and the ability to connect with others. Nationally, the rate of employment for working-age adults with disabilities who need assistance with personal care was just 21 percent of the rate of working-age adults without disabilities. Two states (Minnesota and Nevada) have consistently maintained relative employment rates (ratio of employment rate of working-age adults with ADL disability to those without) of 30 percent or more in recent years. Since the last reporting period, five states (Idaho, Mississippi, North Dakota, Vermont, and Virginia) increased their relative employment rates among working-age adults with disabilities by 20 percent or more, and two states (Alaska and Wyoming) declined by 20 percent or more.

INDICATOR 2: Nursing Home Residents with Pressure Sores

  • KEY FINDING. For the first time, the Scorecard measure of nursing home pressure sores includes three levels of “unstageable” pressure sores, in addition to stage 2–4 pressure sores. Unstageable pressure sores may be open or closed wounds that are completely covered with eschar (hard, black, dead tissue) or a non-removable dressing or device, making them difficult to diagnose. The revised measure provides a more complete picture of the incidence of pressure sores, which were previously undercounted in the publicly reported measure on Nursing Home Compare. North Dakota has the lowest percentage (4.8 percent) of high-risk nursing home residents with pressure sores. At the other end of the spectrum, the percentage in the District of Columbia was nearly triple (13 percent). The average across all states was 7.3 percent.

INDICATOR 3: Inappropriate Use of Antipsychotic Medications for Nursing Home Residents (Nursing Home Antipsychotic Use)

  • KEY FINDING. As many as one in seven long-stay nursing home residents without a psychiatric diagnosis are sedated with antipsychotic medications. Fortunately, states continue to make progress on this measure; a majority of states (28) have significantly reduced inappropriate use of antipsychotic medications since 2015. The 5 states (Arizona, Louisiana, New York, Ohio, and Texas) with the sharpest decline reported decreases ranging from 31 percent to 44 percent. Nationally, inappropriate use of antipsychotic medications has steadily declined by over 30 percent since 2013—from 21.3 percent to 14.6 percent.
"Nationally, inappropriate use of antipsychotic medications has steadily declined by over 30 percent since 2013—from 21.3 percent to 14.6 percent."

INDICATOR 4: HCBS Quality Benchmarking (NEW)

  • KEY FINDING. All states measure quality in their HCBS programs, yet each state uses a unique HCBS quality monitoring system. Despite these variations, a state’s HCBS quality monitoring system should include the ability to benchmark results against other states. This new composite indicator scores states on their utilization of four standardized quality monitoring tools (NCI-AD, HCBS-CAHPS, NCQA, and BRFSS-ES-QOL) that can be used to benchmark HCBS quality and make cross-state comparisons. Three-quarters of states use at least one tool for cross-state benchmarking. Eleven states use multiple monitoring tools. The most commonly used of the four tools was NCI-AD,16 used by 26 states (as of December 2019). Eleven states that used more than one tool used NCI-AD as one of their four monitoring tools.

DIMENSION 4 Support for Family Caregivers

This dimension includes policies that support family caregivers in four main indicators: Supporting Working Family Caregivers, Person- and Family-Centered Care, Nurse Delegation and Scope of Practice, and Transportation Policies. Key findings in each of the four areas are listed below. Exhibit 14 illustrates states’ rankings by quartile in this dimension.

INDICATOR 1: Supporting Working Family Caregivers

This indicator measures performance on six types of policies: (a) protection of family caregivers from employment discrimination, (b) family medical leave, (c) paid family leave, (d) mandatory paid sick days, (e) flexible use of sick time, and (f) unemployment insurance for family caregivers. States and localities have made significant progress passing legislation for paid family leave, paid sick days, and greater flexibility to use sick time for family caregiving responsibilities.

  • KEY FINDING. Protecting Caregivers from Employment Discrimination – Only two states (Delaware and the District of Columbia) have statewide laws that specifically protect family caregivers from workplace discrimination as a protected classification under law. Connecticut has a statewide law, but the provisions do not specifically define family responsibility or family status, and therefore it is not clear whether the protections extend to all family relationships. Localities across 21 states now have provisions addressing family responsibility; About half specifically define family responsibility as a protected classification: for the others, family responsibility and family status are undefined. In addition to providing help for family caregivers who live in these localities, local protections offer the opportunity to test and build momentum for statewide changes. See Exhibit B5 in Appendices for a list of states and localities that have laws protecting caregivers from employment discrimination.
  • KEY FINDING. Federal FMLA – Ten states go beyond the federal minimum Family and Medical Leave Act (FMLA) by covering family members outside the scope of federal protections (e.g., grandparents and siblings), extending the length of leave, or covering smaller employers. The District of Columbia continues to have the most robust protections for family and medical leave. Two states that have paid family leave benefits (California and Washington) no longer have unpaid leave protections that exceed the federal FMLA requirements. However, New Jersey, which passed paid family medical leave legislation in 2008, has also recently expanded its state FMLA provisions to include smaller employers and cover extended family members.
  • KEY FINDING. Paid Family Leave – Since 2016, the number of states with paid family leave legislation has tripled. Six additional states (Connecticut, District of Columbia, Massachusetts, New York, Oregon, and Washington) enacted paid family leave legislation, bringing the total number to nine. Of the six new states, paid family leave benefits are currently available in the District of Columbia, Massachusetts, New York, and Washington. Benefits in Connecticut and Oregon will become available after 2021. Among states with existing programs, New Jersey expanded its paid leave benefits to include smaller employers and permit employees longer lengths of leave.
  • KEY FINDING. Paid Sick Days – More than one-third of states (20) have statewide or local laws mandating paid sick days to employees. Of those 20 states with either statewide or local paid sick leave laws, 13 enacted or expanded (e.g., covering additional employees or permitting longer lengths of leave) their policies in the past three years. See Exhibit B5 in Appendices for a list of states and localities that mandate paid sick days to employees.
  • KEY FINDING. Flexible Use of Sick Time – More states and localities are allowing employees to use a portion of accrued sick time for purposes beyond their own illness. Workplace benefits that allow employees to use sick time for family caregiving responsibilities help employees manage work and family responsibilities. Nineteen states have statewide legislation and one state (New York) has locality legislation in New York City and Westchester County that now allows flexible use of sick time. See Exhibit B5 in Appendices for a list of states and localities that have provisions for flexible use of sick time.
  • KEY FINDING. Unemployment Insurance for Family Caregivers – Family caregivers in half of states (25) can receive temporary financial assistance when returning to the workforce through state unemployment insurance programs if there is “good cause” for job loss due to an illness or disability of an immediate family member.

INDICATOR 2: Person- and Family-Centered Care

This indicator 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 CARE Act.

  • KEY FINDING. Spousal Impoverishment Protections – There continues to be only a handful of states (7) that permit a spouse to keep the maximum amount of income and assets allowed under federal guidelines. This policy helps prevent married couples from falling into poverty or forcing a healthy spouse into Medicaid prematurely. By retaining more of the couples’ own resources, the spouse who is not on Medicaid has a better chance to remain independent, pay for basic necessities without additional state assistance, and manage his or her own health care needs.
  • KEY FINDING. Family Caregiver Assessments – In a high-performing LTSS system, caregivers’ needs—including health, well-being, and work—are assessed and addressed with appropriate information, training, respite, and other services tailored to their individual preferences. The majority of states (41) conduct assessments of family caregivers for their own needs; however, most of these family caregiver assessments happen in smaller family caregiver support programs rather than in the broader Medicaid programs.
  • KEY FINDING. CARE Act Legislation – States continue to make rapid progress on enactment of the CARE Act—model legislation that supports family caregivers when family members enter a hospital and transition back home. As of December 31, 2019, nine additional states have enacted the CARE Act, bringing the total to 41 states.

INDICATOR 3: Nurse Delegation and Scope of Practice

This indicator measures performance on two types of policies: (a) number of health maintenance tasks that can be delegated to direct care workers, and (b) nurse practitioner scope of practice.

  • KEY FINDING. Nurse Delegation – Family caregivers benefit from decision makers expanding the types of health maintenance tasks (e.g., giving medications, tube feedings, providing routine respiratory care) that registered nurses can delegate to home care aides. Nurse delegation helps family caregivers who may have to leave work during the day or hire a nurse to perform these routine tasks. Eighteen states (up from 16) allow registered nurses to delegate a full range of a sample set of 16 tasks to home care aides. In 2011, when the Scorecard first measured nurse delegation, only 12 states allowed delegation of 14 or more sample tasks. That number has more than doubled, and half of states (26) allow delegation of at least 14 sample tasks. Still, the bottom-performing states lag significantly on this measure. Four states (Florida,17 Indiana, Pennsylvania, and Rhode Island) do not permit delegation of any of the sample set of health maintenance tasks. Roughly a quarter of states (12) permit nurses to delegate only three or fewer tasks.
  • KEY FINDING. Scope of Practice – Giving nurse practitioners authority to practice to the full extent of their education and training can ease the shortage of primary care providers. This can also help family caregivers by expanding options for care recipients to receive primary care services in the setting of their choice (e.g., medical offices, community health centers, adult day centers, at home). Twenty-three states allow patients to benefit from the full range of care nurse practitioners are educated and trained to provide.

INDICATOR 4: Transportation Policies

  • KEY FINDING. Transportation Policies – Many older people and adults with disabilities depend on volunteer drivers who provide transportation to medical appointments or to get around town. In most states, however, these volunteer drivers face liability exposure, spikes in car insurance premiums, or other regulatory barriers.18 Although states can use policy options to protect volunteer drivers, relatively few states have done this. Only seven states (up from five in the last Scorecard) protect drivers from insurance cancelation or rate increases for volunteer driving activities. These policies make it easier to recruit volunteer drivers to help older adults and people with disabilities get around.

DIMENSION 5 Effective Transitions

This dimension includes five indicators. These indicators for measuring effective transitions and the key findings are listed below. Exhibit 15 illustrates states’ rankings by quartile in this dimension.

INDICATOR 1: Nursing Home Residents with Low Care Needs

  • KEY FINDING. The high-performing states significantly outpace the low-performing states on this measure. On average, the bottom five states reported one out of five nursing home residents with low care needs, four times the average percentage of the top five states. In Missouri, which has the highest percentage of residents with low care needs, nearly one in four could potentially transition to a home- and community-based setting.

INDICATOR 2: Home Health Hospital Admissions

  • KEY FINDING. Hospital admissions for patients receiving home health care remained steady in 47 states. On average, almost one out of every six (15.8 percent) home health patients were hospitalized. Three states (District of Columbia, North Dakota, and Wyoming) made significant improvements. Alaska was the only state with a significant decline but remained the top-performing state on this measure.

INDICATOR 3: Nursing Home Hospital Admissions

  • KEY FINDING. Nationally, one in six (16.8 percent) long-stay nursing home residents were admitted to the hospital within six months of baseline assessment. Eight states (Arizona, Illinois, Michigan, New Mexico, New York, Ohio, Texas, and Virginia) significantly reduced hospital readmissions since the last edition of the Scorecard. On average, long-stay nursing home residents in the bottom 10 states are twice as likely to be admitted or readmitted to the hospital as residents in the top 10 states.

INDICATOR 4: Burdensome Transitions

  • KEY FINDING. Fifteen states achieved significant progress in reducing excessive hospitalizations or other transitions for vulnerable nursing home residents at the end of life. Despite these improvements, more than a quarter of nursing home residents still experience a burdensome transition, and performance differs greatly among states. Roughly twice as many nursing home residents experience burdensome transitions in the bottom five performing states (35.2 percent) compared with the top five performing states (18.4 percent).

INDICATOR 5: Percentage of Short-Stay Residents Who Were Successfully Discharged to the Community (Successful Discharge to Community)

  • KEY FINDING. Nationally, just over half (54 percent) of Medicare skilled nursing home residents were successfully discharged back to the community. The top five states for this indicator (Alaska, Arizona, Hawaii, Oregon, and Utah) successfully transitioned more than 60 percent of nursing home residents back to the community. Only Louisiana transitioned substantially fewer than 50 percent.

15 Late expansion states expanded between January 1, 2015, and July 1, 2016. For all of these states, the baseline period is at least 50 percent pre-expansion, and the current period is mostly or entirely post-expansion. Therefore, in these five states, the difference reflects a pre- to post-expansion comparison.

16 NCI‐AD is a consumer experience survey that collects and maintains state data on the impact that publicly funded LTSS has on the quality of life and outcomes of consumers. NCI‐AD is a collaborative effort between ADvancing States and Human Services Research Institute. ADvancing States, Arlington, VA. See

17 On March 11, 2020, Florida enacted H.B. 607 (Direct Care Workers), which expands consumer access to nurse practitioners and certified nurse midwives and authorizes registered nurses to delegate certain clinical tasks to direct care workers (certified nursing assistants and home health aides). The law becomes effective July 1, 2020. These results are not reflected in the 2020 Scorecard because enactment occurred after December 31, 2019, the cut-off date for this measure. However, these results will be reported in future reporting.

18 Katherine Freund et al., “Environmental Scan of Ride Share Services Available for Older Adults,” University of Chicago, National Opinion Research Center, Chicago, IL, December 2019,


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