The KFF COVID-19 Vaccine Monitor is an ongoing research project tracking the public’s attitudes and experiences with COVID-19 vaccinations. Using a combination of surveys and qualitative research, this project tracks the dynamic nature of public opinion as vaccine development and distribution unfold, including vaccine confidence and acceptance, information needs, trusted messengers and messages, as well as the public’s experiences with vaccination.

Key Findings:

• COVID-related business closures, loss of work, and related financial struggles are impacting lower-income households at disproportionate levels. Workers with household incomes less than $40,000 were more likely to report having to miss work due to a COVID-related sickness or concern and were less likely to say their employer provides paid time off if they get sick from COVID-19 or need to quarantine following a COVID-19 exposure. Six in ten workers with household incomes less than $40,000 report missing work for COVID concerns during the past three months, compared to fewer than four in ten of higher income workers. In addition, one-third (32%) of workers in households with incomes below $40,000 report getting paid time off if they get sick from COVID-19 compared to more than half of those earning $40,000 or more.
• Among workers who had to miss work due to COVID-19 concerns or sickness (42% of all workers), about one in five say missing work had a “major impact” on the level of stress in their family or on their family’s finances. Overall, about one in ten workers say they missed work due to COVID concerns and that it had a “major impact” on their family but this rises to one in four workers in households with an income under $40,000.
• Amidst the financial uncertainty, it is perhaps unsurprising that a small but notable share of workers say they have either gone to work or sent their child to school or daycare when they either had or were exposed to COVID-19 because they couldn’t afford to miss work. One in ten(11%) workers say they have gone to work when they had COVID-19 symptoms or had been exposed to the virus because they couldn’t afford to take the time off, rising to about three in ten among those in lower-income households (those earning less than $40,000 annually). Additionally, five percent of employed parents say they have sent their child to school or daycare when they had COVID-19 symptoms or had been exposed to the virus because they couldn’t take the time off work. Fifteen percent of workers whose employer does not offer paid time if they get sick from COVID-19 say they have gone into work when they had COVID-19 symptoms or had been exposed because they couldn’t afford to take the time off (compared to six percent of those whose employer offers paid time off).
• Overall, lower-income families and workers, as well as members of racial and ethnic minority groups, report a disproportionate impact on their finances in the latest surge of coronavirus cases during the omicron wave. While the share of U.S. adults who reported difficulty paying bills or expenses wasn’t as widespread as seen during previous coronavirus waves, challenges remain for some households – most notably nearly half of those with household incomes less than $40,000 annually say they have had problems affording at least one of these expenses during the past 3 months, roughly four times the rate among those with incomes of at least $90,000 a year.

Four In Ten Workers Had To Miss Work Due To COVID-19, Many Don’t Receive Paid Time Off For COVID-Related Absences

This month’s KFF COVID-19 Vaccine Monitor explored how the recent omicron surge impacted the economic stability of U.S. families and workers. Four in ten workers (42%) say they had to miss work at least once in the past three months because of a COVID-19 related concern or sickness. This includes one in four workers (26%) who say they had to miss work to quarantine following a COVID-19 exposure, one in five who missed work because they tested positive for COVID-19, and one in eight (13%) who missed work because their place of employment was closed or reduced hours due to COVID-19 concerns. Additionally, three in ten parents (28%) say they had to miss work in the past three months because they had to stay home with a child who had to quarantine, or their child’s school went virtual due to COVID-19 concerns.

Lower-income workers are more likely than those with higher incomes to report missing work in the past three months due to COVID-related concerns, particularly when it comes to workplace closures. Six in ten workers with household incomes less than $40,000 report missing work for COVID concerns during the past three months, compared to less than four in ten of higher income workers. In particular, one-third of lower-income workers (35%) say they missed work because their workplace was closed or had reduced hours, compared to fewer than one in ten among workers with higher incomes. Half of Hispanic workers (47%) say they have had to miss work in the past three months due to COVID-19-related issues as did four in ten White workers (42%) and more than one-third (35%) of Black workers.

One In Five WORKERS WHO MISSED WORK DUE TO COVID Report It Had Major Impact ON FAMILY FINANCES OR STRESS LEVEL

Among the 42% of workers who had to miss work due to COVID-19 concerns or sickness, six in ten (62%) say missing work had a “major impact” or “minor impact” on their family’s stress level and four in ten (44%) say it has impacted their family’s finances. About one in five say missing work had a “major impact” on the level of stress in their family (22%) or on their family’s finances (19%).

Overall, about one in ten workers say that they had to miss work due to COVID-related concerns in the past three months, and that missing work had a major impact on their family’s stress or finances. Individuals living in households with lower incomes are more likely to report that missing work had a major negative impact on their family. One-fourth of workers in households with incomes less than $40,000 report missing work for COVID-concerns and say that this had a major impact on their family’s finances or the level of stress in their family, compared to less than one in ten in households with higher levels of income. One in five Hispanic adults (18%) report loss of work that had a major negative impact, as do about one in eight Black adults and one in ten White adults.

Many Lower-Income Workers Report Not Having Paid Time Off When Sick Or Needing To Quarantine

One way to protect employees’ health and reduce the spread of COVID-19 in workplaces is for employers to offer their employees paid time off. About half of workers (52%) say their employer provides paid time off if they get sick from COVID-19 while less than half report receiving paid time off if they need to quarantine (44%), or to stay home with a child (35%) who can’t attend school or daycare because of COVID-related concerns. Slightly more than one-third of all employees say their employer offers paid time off to get vaccinated or boosted (37%) or to recover from vaccine side effects (36%).

While half of all workers report paid time off if they are sick from COVID-19, getting time off to recover from COVID is less common among those in households with lower incomes. One-third (32%) of workers in households with incomes below $40,000 report getting paid time off if they get sick from COVID-19 compared to more than half (57%) of those earning $40,000 or more. Similarly, three in ten (28%) lower-income workers report having paid time off if they need to quarantine following a COVID-19 exposure compared to half of higher-income workers. About one-third of lower-income workers report being unaware if they receive paid time off in either of these instances.

Among those who report missing work due to COVID-19 concerns or sickness in the last three months, less than half report that their employer offers paid time off if they get sick from COVID-19 (48%), if they need to quarantine because of a COVID-19 exposure (42%), or if their child has to stay home from school or daycare (27%).

Without Paid Time Off, Some have To Continue Working When Sick Or Quarantining

A notable share of workers, especially among lower-income households, say they have gone to work amidst COVID-19 concerns because they couldn’t afford to miss work. One in ten workers (11%) say they have gone to work when they had COVID-19 symptoms or had been exposed to the virus because they couldn’t afford to take the time off, rising to about three in ten among those in lower-income households (those earning less than $40,000 annually). Fifteen percent of workers whose employer does not offer paid time if they get sick from COVID-19 say they have gone into work when they had COVID-19 symptoms or had been exposed because they couldn’t afford to take the time off (compared to six percent of those whose employer offers paid time off).

Additionally, five percent of employed parents say they have sent their child to school or daycare when they had COVID-19 symptoms or had been exposed to the virus because they couldn’t take the time off work.

Many workers also report being exposed to coronavirus at work with one-third of those who tested positive or had to quarantine saying their exposure happened at their workplace. Half (52%) say their exposure occurred outside of work while an additional 15% are unsure where they were exposed to coronavirus.

Three In Ten Say Their Household Had Difficulty Paying Bills During Omicron Surge

Overall, about three in ten U.S. adults say their household has had difficulty paying bills over the past three months, during the latest wave of coronavirus cases with the omicron surge. This includes one in five (17%) who say they have fallen behind in paying credit cards or other bills, and about one in ten who say they have had problems paying for food (13%), medical bills (12%), affording health insurance (11%), or have fallen behind in their rent or mortgage payments (9%).

The share of households who experienced economic impacts during the omicron surge is somewhat lower than the level measured at other points during the pandemic (July 2020 and February 2021) when there was a large number of cases of the virus in the U.S. but before there were vaccines widely available.

While the share of U.S. adults who reported difficulty paying bills or expenses wasn’t as widespread as seen during previous coronavirus waves, members of racial and ethnic minority groups, as well as those with lower levels of income, are still reporting difficulty at higher rates.

Nearly half of Black adults (48%) and one-third of Hispanic adults (34%) report difficulty paying such bills, compared to a smaller share of White adults (22%). In addition, about half (47%) of those with household incomes less than $40,000 annually say they have had problems affording at least one of these expenses during the past 3 months, roughly four times the rate among those in families with incomes of at least $90,000 a year (12%).

This KFF COVID-19 Vaccine Monitor was designed and analyzed by public opinion researchers at the Kaiser Family Foundation (KFF). The survey was conducted February 9-21, 2022, among a nationally representative random digit dial telephone sample of 1,502 adults ages 18 and older (including interviews from 301 Hispanic adults and 279 non-Hispanic Black adults), living in the United States, including Alaska and Hawaii (note: persons without a telephone could not be included in the random selection process). Phone numbers used for this study were randomly generated from cell phone and landline sampling frames, with an overlapping frame design, and disproportionate stratification aimed at reaching Hispanic and non-Hispanic Black respondents as well as those living in areas with high rates of COVID-19 vaccine hesitancy. Stratification was based on incidence of the race/ethnicity subgroups and vaccine hesitancy within each frame. High hesitancy was defined as living in the top 25% of counties as far as the share of the population not intending to get vaccinated based on the U.S. Census Bureau’s Household Pulse Survey.  The sample also included 130 respondents reached by calling back respondents that had previously completed an interview on the KFF Tracking poll at least nine months ago. Another 87 interviews were completed with respondents who had previously completed an interview on the SSRS Omnibus poll (and other RDD polls) and identified as Hispanic (n=25; including 1 in Spanish) or non-Hispanic Black (n=62). Computer-assisted telephone interviews conducted by landline (172) and cell phone (1,330; including 1,017 who had no landline telephone) were carried out in English and Spanish by SSRS of Glen Mills, PA. To efficiently obtain a sample of lower-income and non-White respondents, the sample also included an oversample of prepaid (pay-as-you-go) telephone numbers (25% of the cell phone sample consisted of prepaid numbers) Both the random digit dial landline and cell phone samples were provided by Marketing Systems Group (MSG). For the landline sample, respondents were selected by asking for the youngest adult male or female currently at home based on a random rotation. If no one of that gender was available, interviewers asked to speak with the youngest adult of the opposite gender. For the cell phone sample, interviews were conducted with the adult who answered the phone. KFF paid for all costs associated with the survey.

The combined landline and cell phone sample was weighted to balance the sample demographics to match estimates for the national population using data from the March 2021 U.S. Current Population Survey (CPS) on sex, age, education, race, Hispanic origin, region, and marital status, within race-groups, along with data from the 2010 Census on population density. The sample was also weighted to match current patterns of telephone use using data from the January-June 2021 National Health Interview Survey. The sample is also weighted to account for the possibility of nonresponse, including partisan nonresponse, based on previous months of KFF national polls and this current survey. The weight takes into account the fact that respondents with both a landline and cell phone have a higher probability of selection in the combined sample and also adjusts for the household size for the landline sample, and design modifications, namely, the oversampling of potentially undocumented respondents and of prepaid cell phone numbers, as well as the likelihood of non-response for the recontacted sample. All statistical tests of significance account for the effect of weighting.

The margin of sampling error including the design effect for the full sample is plus or minus 3 percentage points. 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. Sampling error is only one of many potential sources of error and there may be other unmeasured 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.

This work was supported in part by grants from the Chan Zuckerberg Initiative DAF (an advised fund of Silicon Valley Community Foundation), the Ford Foundation, and the Molina Family Foundation. We value our funders. KFF maintains full editorial control over all of its policy analysis, polling, and journalism activities.

The COVID-19 pandemic brought new focus to the long-standing unmet need for home and community-based services (HCBS) among seniors and people with disabilities and direct care workforce shortages. Recognizing Medicaid’s role as the primary payer for HCBS, the American Rescue Plan Act (ARPA) temporarily increased federal funding to support Medicaid HCBS. The Build Back Better Act (BBBA), as passed by the House in November 2021, would provide $150 billion in new federal funds for Medicaid HCBS, including a permanent increase in the federal matching rate. The prospects for the BBBA remain uncertain in the Senate. This issue brief presents findings on key state policy choices about Medicaid HCBS in FY 2020. This is the latest data available, and the first since the onset of the COVID-19 pandemic. The data were collected in KFF’s 19^th survey of state officials administering Medicaid HCBS programs in all 50 states and DC. A related brief presents the latest state-level data about the number of people receiving HCBS and HCBS spending. Key findings include the following (Figure A):

• Who to cover: HCBS waivers are the primary authority that states use to provide HCBS, and states continue to develop new waivers targeted to particular populations. The vast majority of waivers use the same or less stringent financial and functional eligibility criteria as are required for institutional care, to avoid incentivizing eligibility for institutional care. To determine functional eligibility, states most typically require that individuals need help with at least three self-care needs to be eligible for a waiver.  Unlike state plan HCBS, states are allowed to cap enrollment in HCBS waivers. Most states report HCBS waiver waiting lists, totaling over 665,000 people nationally, though state variation in policies makes waiting lists an incomplete measure of program needs and state capacity, and waiting lists are not directly comparable among states or from year to year. Notably, the majority of people on waiting lists are in seven states that do not screen for waiver eligibility before placing individuals on a list.
• What to cover: Substantial variation in which HCBS are covered by each state’s Medicaid program continues. While 37 states offer personal care services in their state plan benefit package, 13 offer the Section 1915 (i) state plan option to provide HCBS to people with functional needs before they reach an institutional level of care, and nine offer Community First Choice attendant services. Benefits vary across HCBS waivers, though home-based services and equipment/technology/modifications are among the most frequently offered services in HCBS waiver benefit packages across all states and target populations.
• How to deliver services: Over half of states deliver some or all HCBS waiver services through capitated managed care. Alabama’s new managed fee-for-service HCBS model is a notable exception to the use of capitated delivery systems. All states except Alaska offer at least one HCBS waiver with the option for enrollees to self-direct their services. Nationally, over two-thirds of HCBS waiver enrollees self-directing services are seniors and people with physical disabilities, and about one-third are people with intellectual or developmental disabilities. 
• How much to pay providers: The average provider reimbursement rate for home health agency services is $118.82 per visit in 20 of 51 states providing this data. The average provider reimbursement rate paid to personal care agencies is $23.09 per hour in 22 of 37 states reporting this data. There is a wide range among states in reimbursement rates. While survey response rates for these questions were low for FY 2020, these data are consistent with responses in prior survey years when response rates were higher. Notably, these rates are what states pay provider entities and may not reflect the wages received by individual direct care workers employed by the provider.

Looking ahead, states’ ability to make longer-term systemic changes and investments to expand access to HCBS is likely to be affected by whether the permanent increase in federal Medicaid matching funds for HCBS, as contained in the BBBA Act as passed by the House, ultimately becomes law. BBBA not only provides additional funding, without an expiration date, but also encourages states to assess their HCBS programs more holistically, moving away from a siloed focus on specific populations. This year’s HCBS state policy survey not only provides a snapshot of policies in place during the pandemic but also can serve as a baseline from which to measure changes in state policies in light of new federal funds available through the APRA and (if passed) the BBBA and in response to the increased focus on HCBS instead of institutional care due to the pandemic.

It will be important to understand how states use new federal funds to expand who is eligible for HCBS and which services are provided, as well as how the new funds may affect states’ and providers’ capacity to deliver services, and the extent to which new funds bolster the direct care workforce through increased payments. If passed, BBBA would make a significant investment in HCBS, which could help states address long-standing needs that were highlighted by the pandemic. States that choose to accept the new BBBA funds would have to identify HCBS access barriers and unmet needs to address with the new funds. To the extent that barriers may differ among states, states’ responses to address those barriers also may differ. Additionally, states are starting in different places in terms of the breadth of their existing HCBS programs. However, BBBA also could incentivize states to move toward some national uniformity. For example, states that accept BBBA funds would have to cover personal care state plan services, provide family caregiver supports, and adopt or expand Medicaid eligibility for working people with disabilities. These initiatives could reduce existing variation in HCBS eligibility and benefits across states.

Introduction

The COVID-19 pandemic has disproportionately affected seniors and people with disabilities who rely on long-term services and supports (LTSS) to meet daily self-care and independent living needs and the direct care workers who provide these services. As the primary source of funding for home and community-based services (HCBS), state Medicaid programs have faced long-standing challenges related to the aging population, direct care workforce shortages, and an insufficient supply of affordable accessible housing. All of these challenges pre-dated and have been intensified by the pandemic. Nearly all HCBS are provided at state option, resulting in substantial variation among states. State Medicaid programs vary in many respects, due to the number of options available to states in all program areas, beyond HCBS. During the COVID-19 public health emergency (PHE), states have used Medicaid emergency authorities to adopt various policies to streamline and expand access to HCBS and support providers, illustrating the range of HCBS options available to states. States will face choices about whether to continue these policies after the PHE ends.¹  States also will likely consider how to continue to expand the HCBS provider infrastructure, which experienced some permanent closures and financial challenges during the pandemic.

This issue brief presents the latest findings on key state policy choices about Medicaid HCBS in FY 2020. The data were collected from March through August 2022 in KFF’s 19^th survey of state officials administering Medicaid HCBS programs in all 50 states and DC.²  Our survey captured some of the early impacts of the COVID-19 pandemic, though additional impacts will be seen in FY 2021 and beyond. Most states began FY 2020 in July 2019, prior to the pandemic’s onset. By the last quarter of FY 2020, states were facing uncertainty about the pandemic and the economy. An earlier brief presented survey findings about state policies adopted in response to the pandemic and the pandemic’s impact on people receiving Medicaid HCBS and providers. A related brief presents the latest state-level data on the number of people receiving HCBS and HCBS spending.

Overall, 47 states responded to this year’s survey, though response rates for particular questions varied.³   When available, prior years’ data was used to supplement missing data for states that did not submit complete survey responses. When prior years’ data was unavailable, we indicate when state-level data are omitted from totals. The survey encompasses four Medicaid HCBS state plan benefits (home health, personal care, Section 1915 (i), and Community First Choice (CFC)) and two waiver authorities (Section 1915 (c) and Section 1115⁴ ). The Appendix Tables contain detailed state-level data. We report findings related to key state policy choices in four areas:

• Who to cover, including target populations, functional eligibility criteria, financial eligibility criteria, and waiver waiting lists;
• What to cover, including state plan and waiver benefit packages and out-of-pocket costs;
• How to deliver services, including use of capitated managed care, self-direction opportunities, covered provider types, and electronic visit verification systems; and
• How much to reimburse providers, including reimbursement rates for home health and personal care services.

Who to Cover

Target populations

Some HCBS authorities enable states to target services to a specific population of seniors and/or people with disabilities. The Section 1915 (i) state plan option allows states to offer an HCBS benefit package targeted to a specific population with functional needs that are less than an institutional level of care. Additionally, states use Section 1915 (c) or Section 1115 HCBS waivers to offer a benefit package targeted to a specific population who would otherwise need institutional services.

Just under half of the 13 states that offer Section 1915 (i) state plan services to people with functional needs that are less than an institutional level of care target people with mental illness.⁵  The six states providing Section 1915 (i) state plan services to people with mental illness include Arkansas, Idaho, Indiana, Iowa, Ohio, and Texas. Four states (CA, DE, ID, and MS) provide Section 1915 (i) state plan services to people with intellectual or developmental disabilities (I/DD), and four states provide Section 1915 (i) state plan services to seniors and/or people with physical disabilities (CT-seniors only, DC, MI, and NV).

Nationally, there are a total of 267 HCBS waivers serving a variety of target populations in FY 2020.⁶  Section 1915 (c) waivers continue to account for the vast majority (255) of HCBS waivers (Appendix Table 1), with the remaining dozen HCBS waivers authorized under Section 1115 HCBS (Appendix Table 2).⁷  Four states (AZ, NJ, RI,⁸  and VT) use a Section 1115 waiver to provide HCBS to all covered populations and do not offer any Section 1915 (c) waivers, while eight states⁹  serve some populations under a Section 1115 waiver and other populations through Section 1915 (c) waivers. The other 39 states offer one or more Section 1915 (c) waivers. The number of Section 1915 (c) HCBS waivers averages five per state. The greatest number of Section 1915 (c) waivers per state is 10 (in CO, CT, MA, and MO). Section 1915 (c) waivers are targeted to a single population, while Section 1115 HCBS waivers serve multiple populations.

All states serve people with I/DD,¹⁰  seniors, and nonelderly adults with physical disabilities¹¹  through HCBS waivers (Figure 1 and Appendix Tables 1 and 2). Fewer states use HCBS waivers to serve people with traumatic brain and/or spinal cord injuries (TBI/SCI),¹²  children who are medically fragile or technology dependent,¹³  people with mental health disabilities,¹⁴  and people with HIV/AIDS.¹⁵ 

Several states report offering new HCBS waivers serving various populations in FY 2020. These include:

• Three states with new waivers serving people with I/DD (MD (with two new waivers serving this population), NC, and NM);
• Two states with new waivers serving seniors and adults with physical disabilities (MI, effective January 2020, and MO, effective July 2020);¹⁶ 
• One state with a new waiver serving children with serious emotional disturbance (WV); and
• One state with a new waiver serving people with traumatic brain injuries (MO).

See the Financial Eligibility and Capitated Managed Care sections below for additional discussion of recent HCBS waiver activity.

Functional eligibility

Some HCBS authorities require individuals to meet functional criteria to qualify for services. Functional eligibility typically is assessed based on self-care and/or household activity needs. Self-care needs may include assistance with tasks such as eating, bathing, or dressing, while household activity needs may include assistance with tasks such as preparing meals or managing medications. To qualify for Section 1915 (i) state plan HCBS, individuals must have functional needs that are less than what the state requires to meet an institutional level of care. Section 1915 (c) and Section 1115 HCBS waivers generally require individuals to meet an institutional level of care, though some states establish functional eligibility criteria for waivers that differ from the criteria they use for nursing home or other institutional eligibility.

Since adopting the Section 1915 (i) state plan option, no state has chosen to restrict functional eligibility to control enrollment. Unlike waivers, states are not permitted to cap enrollment or maintain a waiting list for state plan HCBS. However, states can manage enrollment under Section 1915 (i) by restricting functional eligibility criteria if the state will exceed the number of beneficiaries that it anticipated serving. Despite the availability of this option, none of the 13 states that offers Section 1915 (i) state plan services reports using it to date.

Nearly all (262 of 267) HCBS waivers use functional eligibility criteria that are the same as or less stringent than the criteria to qualify for institutional services.¹⁷  Most HCBS waivers (242 in 50 states) use the same functional eligibility criteria as are required for nursing facility eligibility, treating HCBS and institutional care equally. A minority of waivers (20 in 10 states) use functional eligibility criteria that are less stringent than those required for institutional care, making HCBS eligibility broader than eligibility for institutional care. Using the same functional eligibility criteria for HCBS waivers and institutional care removes any potential bias in favor of institutional care. Additionally, adopting HCBS functional eligibility criteria that are less stringent than what is required for institutional care can allow states to provide HCBS in an effort to preventing or delaying an individual’s need for institutional care if functioning were to decline without services.

Just five waivers use functional eligibility criteria that are more restrictive than those required for institutional care. Two of these waivers, in Oklahoma and Oregon, serve medically fragile children and set financial eligibility the same as for institutions, though functional eligibility is more restrictive. One South Carolina waiver serves seniors and adults with disabilities and requires dependence on a ventilator in addition to a nursing home level of care. Two Texas waivers serve people with I/DD.

Self-care needs are the type of need most frequently required to establish functional eligibility, compared to household activity needs. Forty-three percent of all waivers (115 in 33 states) require individuals to have self-care needs to establish functional eligibility, while one-quarter require individuals to have household activity needs to establish functional eligibility.¹⁸  One-quarter (68 in 21 states) require individuals to have both self-care and household activity needs to establish functional eligibility. Most states utilize a state-specific tool to conduct the functional needs assessment for HCBS waivers.

States most typically require that an individual need help with three needs to be eligible for a HCBS waiver.  Among the waivers that require self-care needs for functional eligibility, 55 (in 17 states) require three or more needs.¹⁹  Two self-care needs are required in 30 waivers (12 states), and another 30 waivers (13 states) require one self-care need. Although states that selected “three or more needs” were not asked to provide a specific number, Arizona volunteered that seven self-care needs are required to qualify for its Section 1115 HCBS waiver. Among the waivers that require household activity needs for functional eligibility, 33 waivers (in 10 states) require three or more needs, while fewer waivers require one need (23 in 10 states) or two needs (12 in 5 states).²⁰ 

Many waivers (205 of 216 reporting) require individuals to satisfy other criteria, in addition to self-care and/or household activity needs, to establish functional eligibility.²¹  The majority of waivers with other functional eligibility criteria require a specific diagnosis (119 waivers in 36 states), such as autism or intellectual disability, traumatic brain injury, or a mental health condition. Very few waivers (8 in 5 states) require the need for cueing as part of the functional eligibility determination.

Financial eligibility

Two state plan HCBS authorities (Section 1915 (i) and CFC) have financial eligibility limits that determine whether individuals can qualify to receive those services. (Individuals already must be eligible for Medicaid under a state plan or HCBS waiver pathway, and these additional financial eligibility criteria govern access to these particular services.). Furthermore, while states can use waivers just to authorize an HCBS benefit package (provided to people who qualify for Medicaid through state plan eligibility pathways), most states also use waivers to expand financial eligibility for HCBS beyond the limits in state plan pathways, up to a maximum of 300% of SSI ($2,523/month for an individual in 2022).

Three of the 13 states that offer the Section 1915 (i) state plan option extend financial eligibility for these services up to the federal maximum of 300% SSI.²²  These states include Idaho, Indiana, and Ohio. The remaining nine states provide Section 1915 (i) services to people with income up to 150% FPL. Under Section 1915 (i), states can provide services to (1) people who are eligible for Medicaid under the state plan up to 150% FPL, with no asset limit, who meet functional eligibility criteria; and also may cover (2) people up to 300% SSI who would be eligible for Medicaid under an existing HCBS waiver.

Nearly all of the nine states that offer the CFC state plan option expand financial eligibility for these services to people who qualify for Medicaid under an HCBS waiver. The exception is Montana. All states electing the CFC option must provide services to individuals who either (1) are eligible for Medicaid in a state plan pathway that includes nursing home services in the benefit package, or (2) have income at or below 150% of the federal poverty level (FPL), $1,699/month for an individual in 2022).²³  States can choose to expand CFC eligibility to individuals who are eligible for Medicaid under an HCBS waiver, up to the federal maximum of 300% of SSI.²⁴ 

Three-quarters of HCBS waivers expand income eligibility to the federal maximum (300% SSI), and nearly all waivers set income eligibility limits at or above the state’s limit to qualify for institutional care.²⁵  A minority of HCBS waivers (15 in 5 states) limit income to 100% of SSI ($841/month for an individual in 2022) (Figure 2 and Appendix Table 3). Most waivers (217 in 46 states) use the same income limits as apply to nursing home eligibility, and another 31 waivers in seven states use income limits that are less stringent than those required for institutional care. By contrast, 19 waivers in six states (MA, MI, MO, MT, NC, TX) use income limits that are more restrictive than those required for institutional care. Notably, two of these states (MT and NC) apply more restrictive income limits than those required for institutional care in all of their HCBS waivers; the other four states do so only for certain populations.   Using the same income limits for HCBS waivers and institutional care removes any potential bias in favor of institutional care, which can occur if an individual must have less income to receive HCBS than to receive institutional services.

Over three-quarters of HCBS waivers apply the federal SSI asset limit of $2,000 for an individual, and almost all waivers use the same asset limit as is required for institutional care.²⁶  A small share of waivers (38 in 11 states) have an asset limit that is higher than the SSI amount, ranging from $2,500 to $4,000 (Figure 2). Eight states apply this higher asset limit to all waiver populations (DC, MN, MS, MO, NE, NH, ND, RI), while 2 states (NY and WA) apply the higher asset limit to some waiver enrollees. Additionally, nine waivers in seven states (MA, MO, NC, ND, WV, WI) do not have any asset limit. Waivers without an asset limit most frequently target children with I/DD or individuals with mental illness. Connecticut is the only state that applies an asset limit lower than the federal SSI amount ($1,600 per individual).²⁷  Eight waivers in six states (MA, SC, UT, WA, WV, WI) have asset limits that are higher than the limit for institutional care. Box 1 below highlights recent Section 1115 waiver activity where states are adopting or proposing waivers to expand HCBS financial eligibility to new populations who are not otherwise Medicaid eligible. Results from these demonstrations will be important to watch, with the potential for identifying promising practices that other states may adopt.

Waiver waiting lists

Unlike state plan services, HCBS waivers allow states to choose – and limit – how many people are served. States’ ability to cap HCBS waiver enrollment can result in waiting lists when the number of people seeking services exceeds the number of waiver slots available. Waiting lists are a function of the populations a state chooses to serve and how the state defines those populations; both factors vary among states, making waiting lists an incomplete measure of state capacity and need for HCBS and not directly comparable among states. While all states have waivers serving people with I/DD, seniors, and adults with physical disabilities, fewer states offer waivers for other target populations. Consequently, there may be a particular population in need of services, but the state does not keep a waiting list because it does not offer a waiver for that population. In addition, all states do not define the eligibility criteria for their waiver target populations in the same way. The Build Back Better Act, as passed by the House, would provide states with enhanced federal matching funds for HCBS without a time limit. This could enable states to increase access to HCBS by serving more people and reducing waiting lists.

Most states (39) have a waiting list for at least one HCBS waiver,³³  with over 665,000 people on HCBS waiver waiting lists nationally at any point in FY 2020.³⁴  However, all individuals on waiting lists ultimately may not be eligible for waiver services. For example, 32 states with waiting lists screen individuals for waiver eligibility before they are placed or while they are on a waiting list, while seven states do not. Notably, the seven states that do not screen for waiver eligibility comprise over half (59%) of the total waiting list population. These states include IA, IL, MI, OK, OR, SC, and TX. Additionally, most states with waiting lists (28 of 39) allow individuals to be on more than one waiting list at a time. Waiting list enrollment remained roughly flat between FY 2019 and FY 2020 nationally, though changes in state policies about who to include on waiting lists make year to year comparisons difficult. From FY 2019 to FY 2020, enrollment was relatively stable in most states, but a few states experienced larger changes. Changes in state waiting lists policies can contribute to larger changes, making year to year comparisons difficult. For example, our survey data reflect a 10 percent drop in waiting lists nationally from FY 2018 to FY 2019, which is primarily attributed to reporting changes in Ohio and Louisiana after those states adopted changes in their assessment policies.³⁵  Waiting list decreases do not necessarily indicate that all people who leave waiting lists are receiving services.

People with I/DD comprise 70 percent of the total waiver waiting list population (Figure 3 and Appendix Table 4). Seniors and adults with physical disabilities account for slightly more than one-quarter of total waiting lists. The remaining three percent of waiver waiting lists is spread among other populations, including children who are medically fragile or technology dependent, people with traumatic brain or spinal cord injuries, people with mental illness, and people with HIV/AIDS. People with I/DD comprise 86 percent of waiting lists in states that do not screen for waiver eligibility before placing someone on a waiting list, compared to 47 percent in states that do determine waiver eligibility before placing someone on a waiting list (Figure 3).

Nationally, individuals waited an average of 44 months to receive waiver services in FY 2020, with substantial variation by target population (Appendix Table 5).³⁶  The average waiting period by population ranged from one month for a waiver targeting people with HIV/AIDS (in 1 state) to 60 months for waivers targeting people with I/DD. Historically, individuals with I/DD have had the longest waiting time for HCBS waiver services compared to all other target populations. All but two states (AL, ND) report that individuals on a waiting list are presently receiving Medicaid state plan HCBS.³⁷  Nearly all (96%) of people on waiver waiting lists currently live in the community.

Almost all (33 of 39) states with waiting lists prioritize individuals with certain characteristics to receive services when slots become available. Twenty-five states offer waivers that give priority to individuals in crisis/emergency status, and 22 states prioritize people who are moving from an institution to the community. Fewer states prioritize individuals based on assessed level of need (16) or age (6). Twenty-two states reported other prioritization criteria including loss of caregiver support, COVID-19, length of time on the waiting list, homelessness, highest utilization review score, aging out of foster care/child services, and need for residential supports. Twenty-seven states use more than one priority group.³⁸  Over two-thirds (28 of 39) of waiting list states have reserve capacity, meaning that some waiver slots are set aside for individuals who will be admitted to the waiver on a priority basis.³⁹ 

What to Cover

States can choose to provide a variety of HCBS in their state plan benefit package. People can gain access to the state plan benefit package through Medicaid eligibility pathways based on low income (including the ACA Medicaid expansion), old age, or disability. State plan benefits are provided to all Medicaid enrollees for whom they are medically necessary.⁴⁰ 

States also can use waivers to authorize HCBS. As described above, waiver benefit packages typically are targeted to a specific population. Eligibility for waiver services may be limited to people who qualify for Medicaid through state plan eligibility pathways, though most states also use waivers to expand financial eligibility for HCBS (discussed above).

State plan benefit packages

All states offer home health state plan services, the only HCBS that is not provided at state option (Figure 4 and Appendix Table 6).⁴¹  At minimum, the home health state plan benefit includes nursing and home health aide services and medical supplies, equipment, and appliances. Home health aides typically assist individuals with self-care tasks, such as bathing or eating. States also can choose to offer physical, occupational, and/or speech-language therapy services as part of their home health state plan benefit.

Thirty-seven states offer the personal care services state plan option (Figure 4 and Appendix Table 6).⁴²  Personal care services assist individuals with a range of self-care tasks, such as eating, bathing, dressing, toileting, transferring; and household activities, such as light housework, laundry, meal preparation, transportation, grocery shopping, using the telephone, and medication and money management.⁴³  Personal care services may be provided via hands-on assistance (actually performing a personal care task for a person) or cueing (providing direction while the person performs the task by themself).⁴⁴ 

Alaska is the newest state to adopt the Community First Choice (CFC) state plan option, bringing the total number of states offering CFC services to nine (Figure 4 and Appendix Table 6).⁴⁵  The CFC option allows states to provide attendant services and supports. States providing CFC services receive enhanced federal matching funds at an additional six percentage points. Four CFC states offer additional services beyond the minimum CFC benefit package. CFC services must include assistance with self-care, household activities, and health-related tasks;⁴⁶  self-direction opportunities; and back-up systems.⁴⁷  States also have the option to cover additional CFC services, including institutional to community transition costs⁴⁸  and supports that increase or substitute for human assistance.⁴⁹  Connecticut, Maryland, Oregon, and Washington cover both types of optional CFC services.⁵⁰ 

Thirteen states offer the Section 1915 (i) state plan option to provide HCBS to people with functional needs that are less than an institutional level of care (Figure 4 and Appendix Table 6).⁵¹  Arkansas is the most recent state to adopt the Section 1915 (i) option, effective March 2019.⁵²  Case management, day services, and supported employment are the most common services offered in Section 1915 (i) benefit packages.⁵³  Other services offered by states under Section 1915 (i) include home-based services, nursing/therapy services, other mental health/behavioral services, and equipment/technology/modifications. Box 2 explains the 12 service categories included in our survey.

HCBS waiver benefit packages

Home-based services and equipment/technology/modifications are among the most frequently offered waiver services across all states and target populations.⁵⁵  Other frequently offered services across all states and waivers include day services, nursing/therapy, and case management. Additionally, some services are more common in waivers that target certain populations. For example:

• States are much more likely to offer supported employment services to individuals enrolled in I/DD and TBI/SCI waivers, compared to other waiver populations.
• Supportive housing services are twice as likely to be offered in waivers serving individuals with I/DD than any other waiver population.
• Non-medical transportation services are included in roughly half of waivers serving people with I/DD and TBI/SCI.

Box 2 above describes the 12 service categories included in our survey, and Table 1 below presents the share of waivers that cover each service category by target population.

Out-of-Pocket Costs

Medicaid cost-sharing, such as copayments, generally is limited to nominal amounts, reflecting the Medicaid population’s low income, and is subject to an aggregate cap of five percent of household income. Some populations are entirely exempt from cost-sharing, such as children under age 18 and people who are terminally ill, among others.⁵⁶  Copayments for state plan services are adopted at state option, and providers cannot deny services to individuals with income below the poverty level who do not pay copayments.

Post-eligibility treatment of income (PETI) rules apply to individuals who are eligible for HCBS under a waiver.⁵⁷  PETI rules require these individuals to contribute a portion of their income to their cost of care, after deducting a monthly maintenance needs allowance, recognizing that they must pay for room and board as well as other basic needs that Medicaid does not cover, such as clothing. There is no federal minimum maintenance needs allowance; instead, states may use any amount as long as it is based on a “reasonable assessment of need” and subject to a maximum that applies to all enrollees under the waiver.⁵⁸  The maintenance needs allowance established by states play a critical role in determining whether individuals can afford to remain in the community and avoid or forestall institutional placement, as Medicaid does not cover room and board in the community.

Eight states require a copayment for home health state plan services,⁵⁹  while one state does so for personal care state plan services.⁶⁰  Home health state plan service copayment amounts range from $1 to $3.30 per visit,⁶¹  with most states (6 of 8) charging about $3. Maine charges a maximum of $3 per day for personal care state plan services.

Thirty-one states require certain HCBS waiver enrollees to contribute a portion of their monthly income to the cost of their care,⁶²  and 15 of those states set the monthly maintenance needs allowance at the federal maximum (300% SSI) for at least one waiver.⁶³  Two states use 100% FPL,⁶⁴  while the remaining states report another amount ranging from $73 in Vermont to $1,913 in Idaho. Amounts vary within some states by waiver program and/or living arrangement. For example, the monthly maintenance needs allowance is higher for individuals in Idaho who have a rent or mortgage obligation.

How to Deliver Services

Capitated Managed Care

States have broad authority to choose the type of service delivery system for Medicaid HCBS. Traditionally, HCBS have been delivered on a fee-for-service (FFS) basis. Over the last decade, states have increasingly been delivering HCBS through capitated managed care. In capitated arrangements, the state contracts with health plans to provide covered services and coordinate care in exchange for a predetermined monthly payment. States also can choose a managed care model that does not involve risk-based capitation. Those models reimburse providers on a FFS basis and provide a separate monthly payment for care coordination services. Box 3 describes a managed FFS service delivery model, recently approved in Alabama.

Over half of states (27) deliver some or all HCBS waiver services using capitated managed care (Figure 5).⁶⁶  Capitated managed care accounts for the vast majority (75% or more) of people receiving HCBS and HCBS spending in states that have adopted that delivery system. Two of the most recently approved capitated HCBS waivers are in West Virginia and Virginia. West Virginia has a joint Section 1915 (b)/(c) waiver, effective FY 2020, providing services to children with serious emotional disorders who are at risk of institutionalization. Virginia’s Section 1115 waiver, approved in July 2020,⁶⁷  includes a “High Need Supports” program, which provides Section 1915 (i)-like services including housing and employment supports using capitated managed care, with geographic and enrollment caps permitted, for state plan enrollees with a health or functional need⁶⁸  and a risk factor,⁶⁹  or those with a risk factor who are expected to benefit from employment support services.⁷⁰ 

Self-Direction

Self-direction typically allows beneficiaries to select and dismiss their direct care workers, determine worker schedules, set worker payment rates, and/or allocate their service budgets. Self-direction is offered at state option for all HCBS authorities, except that self-direction opportunities must be included as part of CFC.

Nearly 437,000 individuals self-direct some or all their Medicaid HCBS waiver services,⁷¹  and another more than 400,000 individuals⁷²  self-direct their personal care state plan services. All states except Alaska offer at least one HCBS waiver with a self-direction option, and over half (19 of 37) states offering the personal care state plan option allow self-direction of those services. By contrast, three states (DE, ID, MS) allow individuals to self-direct Section 1915 (i) services and two states (CA and VA) allow individuals to self-direct home health state plan services. States may be less likely to offer self-direction for home health services at least in part because home health services may be used by some people for shorter periods of time compared to personal care or waiver services.

Nationally, over two-thirds of HCBS waiver enrollees self-directing services were seniors and people with physical disabilities, and about one-third were people with I/DD.⁷³  Self-direction is offered in two-thirds of all HCBS waivers and is more likely to be offered in waivers targeting people with I/DD, seniors, and/or adults with physical disabilities compared to waivers targeting people with mental health disabilities (Figure 6).

State policies about the scope of self-direction vary.⁷⁴  All states that allow self-direction, across HCBS authorities, permit individuals to select and dismiss their direct care workers. Additionally, all states that allow self-direction for HCBS waiver, personal care state plan services, Section 1915 (i), and CFC⁷⁵  services also permit individuals to set worker schedules. The authority to allow individuals to set worker payment rates and/or allocate their service budgets is more common in HCBS waivers (39 states and 34 states, respectively), compared to state plan HCBS. Few states allow individuals to set worker payment rates for personal care state plan services (NJ, UT, VT), Section 1915 (i) services (ID), or CFC services (MD). Similarly, few states allow individuals to allocate service budgets for personal care state plan services (ME, NJ, VT), Section 1915 (i) services (ID), or CFC services (MD).

Covered Providers

States generally determine which types of HCBS providers to include in their Medicaid programs. Covering more provider types can help to increase access to HCBS, which is especially critical during the COVID-19 pandemic, as individuals often rely on these services for basic daily needs.

Almost two-thirds of states allow legally responsible relatives to be paid providers of HCBS waiver services, while fewer states (11) do so for personal care state plan services.⁷⁶  Legally responsible relatives may include a spouse or parent. While not asked in our survey, several states (IN, MT, OH, VA) volunteered that they had adopting new policies allowing legally responsible relatives to be paid providers of direct care services using Medicaid emergency authorities during the COVID-19 PHE.⁷⁷ 

Almost all states allow HCBS waiver enrollees to choose among agency and independent providers,⁷⁸  while over one-third of states offering the personal care state plan option allow individuals to choose among agency and independent providers.⁷⁹  All states offer agency-employed providers for HCBS waiver services, and all but three states (AK, DC, OR) offer independent providers for HCBS waiver services.

Electronic Visit Verification

Federal law now requires states to meet federal electronic verification visit (EVV) requirements⁸⁰  for Medicaid home health and personal care services that require an in-home visit by a provider. States must implement EVV for personal care services by January 1, 2021, and home health services by January 1, 2023.⁸¹  States without compliant EVV systems will receive an FMAP reduction.⁸²  Specifically, states must electronically verify the type of service performed; the individuals receiving the service; the service date; the service delivery location; the individual providing the service; and the time the service begins and ends.⁸³  EVV seeks to reduce unauthorized services, fraud, waste, and abuse and improve service quality.⁸⁴ 

Over three-quarters of states report challenges with implementing EVV, with over half of states (27) facing more than one challenge.⁸⁵  EVV challenges most frequently cited by states relate to provider outreach/education and accommodating enrollees who self-direct services (Figure 7). Other frequently reported challenges include enrollee outreach/education and establishing an EVV system in rural areas. Over 40 percent of states (22) responding to this question cited “other” challenges, such as technology and systems integration issues (KY, ME, OR), lower than expected provider compliance (CO, NV, TN, WI), and COVID-19 related delays (MA, MT, ND).

How Much to Reimburse Providers

States determine provider reimbursement rates, within broad federal standards. Federal law requires that rates must be “consistent with efficiency, economy, and quality of care and sufficient to enlist enough providers so that [Medicaid] services. . . are available to beneficiaries at least to the extent that those services are available to the general population.”⁸⁶ 

The average provider reimbursement rate for home health agency services is $118.82 per visit in FY 2020 (Appendix Table 7).⁸⁷  Agency reimbursement rates account for a range of home health providers, such as registered nurses; home health aides; physical, occupational, and speech-language therapists; and social workers. In the states with direct payment or mandated rates for registered nurses providing home health services, the average rate per visit is $98.22. In the states with direct payment or mandated rates for home health aides, the average rate per visit is $51.97.⁸⁸ 

The average provider reimbursement rate paid to personal care agencies is $23.09 per hour in FY 2020 (Appendix Table 7).⁸⁹  In the nine states that report paying personal care service providers directly or mandating their reimbursement rates, the average rate is $22.24 per hour.

There is a wide range among states in reimbursement rates for both home health and personal care services. While survey response rates for these questions were low for FY 2020, these data are consistent with responses in prior survey years when response rates were higher. The survey asked states to provide the average dollar rate per visit for each provider type. States were not asked to specify whether these rates were amounts that states reimburse providers directly FFS and/or whether they were rates that health plans pay to providers for covered services. Notably, these rates are what states and/or health plans pay provider entities and may not reflect the wages received by individual direct care workers employed by the provider. Other research shows that direct care worker wages are low, with 70% of aides and personal care workers earning less than $30,000 (the 40th percentile of overall long-term care worker earnings) across care settings. Direct care workers who participated in focus groups conducted by KFF in summer 2021 universally agreed that wages were low and did not reflect job demands. They cited improving wages as the top issue for policymakers to address and emphasized the importance of any reimbursement rate increases being passed through to direct care worker wages.

Looking Ahead

Medicaid continues to be the primary source of HCBS, enabling millions of seniors and people with disabilities to remain in their homes and avoid living in nursing homes or other institutions. With long-term care facility deaths from COVID-19 recently surpassing 200,000, there is increased focus among policymakers and the public on avoiding institutional placement and expanding access to HCBS. Yet, substantial variation in HCBS eligibility and services among states continues, creating a patchwork where not everyone who needs services can access them. This variation reflects the optional nature of most Medicaid HCBS; furthermore, HCBS typically are not covered in private insurance and can be expensive for individuals to pay out-of-pocket. While waiting lists are one measure of need for HCBS, they are an incomplete measure and not directly comparable across states or over time. As the population continues to age, and the pandemic continues to create elevated risks for people who need LTSS, it may be important to establish different and more effective ways to measure unmet need.

In the short term, states have access to a temporary increase in federal funding for Medicaid HCBS through the American Rescue Plan Act (ARPA). Looking ahead, states’ ability to make longer-term systemic changes and investments to expand access to HCBS and bolster the direct care workforce is likely to be affected by whether the Build Back Better Act (BBBA) ultimately becomes law. The BBBA, as passed by the House in November 20201, includes a permanent increase in federal Medicaid matching funds for HCBS and also encourages states to assess their HCBS programs more holistically, moving away from a siloed focus on specific populations. The prospects for the bill, including HCBS funding, remains uncertain. This year’s HCBS state policy survey not only provides a snapshot of policies in place during the pandemic but also can serve as a baseline from which to measure changes in state policies in light of new federal funds available through the APRA and (if passed) the BBBA and in response to the increased focus on HCBS instead of institutional care due to the pandemic.

It will be important to understand how states use new federal funds to expand who is eligible for HCBS and which services are provided, as well as how the new funds may affect states’ and providers’ capacity to deliver services, and the extent to which new funds bolster the direct care workforce through increased payments. If passed, BBBA would make a significant investment in HCBS, which could help states address long-standing needs that were highlighted by the pandemic. States that choose to accept the new BBBA funds would have to identify HCBS access barriers and unmet needs to address with the new funds. To the extent that barriers may differ among states, states’ responses to address those barriers also may differ. Additionally, states are starting in different places in terms of the breadth of their existing HCBS programs. However, BBBA also could incentivize states to move toward some national uniformity. For example, states that accept BBBA funds would have to cover personal care state plan services, provide family caregiver supports, and adopt or expand Medicaid eligibility for working people with disabilities. These initiatives could reduce existing variation in HCBS eligibility and benefits across states.

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1. Many, though not all, HCBS policies adopted under emergency authorities can be continued under regular program authorities. See CMS, State Health Official Letter #20-004, Planning for the Resumption of Normal State Medicaid, Children’s Health Insurance Program (CHIP), and Basic Health Program (BHP) Operations Upon Conclusion of the COVID-19 Public Health Emergency at p. 17 (Dec. 22, 2020), https://www.medicaid.gov/federal-policy-guidance/downloads/sho20004.pdf. ↩︎
2. Due to the pandemic, KFF did not survey states in calendar year 2020, so this year’s survey also collected FY 2019 data to account for the missed year. ↩︎
3. The four states that did not respond are the District of Columbia, Hawaii, Minnesota, and New Mexico. In certain areas, states’ previously reported data and supplemental research by KFF helped to calculate national totals. ↩︎
4. Section 1115 HCBS waivers are included in our survey if the state does not have an accompanying Section 1915 (c) waiver. ↩︎
5. Prior years’ data was used to supplement missing data for AR, CA, CT, DC, TX. ↩︎
6. Findings in this section reflect waivers in all 50 states and DC. Prior years’ data was used to supplement missing data for states that did not submit complete survey responses, as indicated in the table notes. ↩︎
7. AL, KS, and NC are excluded from this list because they have joint Section 1115/1915 (c) waivers, with HCBS authorized under Section 1915 (c). MI is excluded from this list because it has a Section 1115 waiver that operates concurrently with its Section 1915 (i) SPA. Additionally, our survey does not include new Section 1115 waivers in MN and VA approved in early 2020 (described further in the Capitated Managed Care section). We anticipate that these states will begin reporting data for the new waivers in our next survey. ↩︎
8. However, RI’s most recent Section 1115 waiver renewal requires the state to transition HCBS authorized under Section 1115 to a Section 1915 (c) waiver or Section 1915 (i) state plan authority to the extent possible. The transition will take place over five years, from January 2019 through December 2023. CMS Special Terms and Conditions, Rhode Island Comprehensive Section 1115 Demonstration, #11-W-00242/1 at ¶ 32 (p. 35-36) (approval period Jan. 1, 2019-Dec. 31, 2023, amended Feb. 6, 2020), https://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Waivers/1115/downloads/ri/ri-global-consumer-choice-compact-ca.pdf. Rhode Island’s waiver renewal also provides that any new HCBS that the state wants to implement after January 1, 2019 must be authorized under Section 1915 (c) or Section 1915 (i). Id. at II (e), p. 13. ↩︎
9. CA, DE, HI, NM, NY, TN, TX, and WA. ↩︎
10. For the I/DD population, 45 states use only Section 1915 (c) waivers, four states (AZ, NJ, RI, and VT) use only Section 1115 waivers, and 2 states (NY and TN) use both waiver authorities. ↩︎
11. For seniors and adults with physical disabilities, 39 states use only Section 1915 (c) waivers, nine states (AZ, DE, HI, NJ, NM, RI, TN, TX, and VT) use only Section 1115 waivers, and three states (CA, NY, and WA) use both waiver authorities. ↩︎
12. Nearly all (21 of 25) states with TBI/SCI waivers use Section 1915 (c), while four (DE, RI, VT, and WA) use Section 1115. FL continues to serve people with TBI but consolidated its TBI waiver into its long-term care Section 1915 (c) waiver for seniors and people with physical disabilities in FY 2018. In addition, while it does not have eligibility criteria specific to people with TBI distinct from the criteria for adults with physical disabilities, the benefit package in NJ’s Section 1115 waiver includes services targeted to people with TBI. ↩︎
13. Most (18 of 20) waivers that target children who are medically fragile or technology dependent are under Section 1915 (c), while two states (HI and RI) use Section 1115. States also may cover children with significant disabilities under the Katie Beckett/TEFRA state plan option. For more information, see KFF, Medicaid Financial Eligibility for Seniors and People with Disabilities: Findings from a 50-State Survey (June 2019), https://modern.kff.org/medicaid/issue-brief/medicaid-financial-eligibility-for-seniors-and-people-with-disabilities-findings-from-a-50-state-survey/. ↩︎
14. Most (11 of 14) mental health HCBS waiver states use only Section 1915 (c), while two states (DE and RI) use only Section 1115, and one state (WA) uses both waiver authorities. ↩︎
15. Five of eight states using HCBS waivers to cover people with HIV/AIDS use Section 1915 (c) authority, while three states (DE, HI, and RI) use Section 1115 for this population. FL continues to serve people with HIV but consolidated its HIV waiver into its long-term care Section 1915 (c) waiver for seniors and people with physical disabilities in FY 2018. ↩︎
16. MO reported this waiver as pending CMS approval, and it is not counted in our waiver total. CMS subsequently approved this waiver. MO Structured Family Caregiving Waiver, #1706.R00.00 (approved 9/7/21, effective 7/1/20), https://www.medicaid.gov/medicaid/section-1115-demo/demonstration-and-waiver-list/82356. ↩︎
17. Findings in this section reflect waivers in all 50 states and DC. Prior years’ data was used to supplement missing data for CA, DC, GA, HI, MN, NM. ↩︎
18. Sixteen waivers did not respond to this survey question. ↩︎
19. 46 waivers that require self-care needs did not respond to this question. ↩︎
20. 36 waivers that require household activity needs did not respond to this question. ↩︎
21. Seven states (CA, DC, GA, HI, MN, NM, UT) did not respond to this question. ↩︎
22. Prior years’ data was used to supplement missing data for AR, CA, CT, DC, TX. ↩︎
23. 42 C.F.R. § 441.510 (a), (b). ↩︎
24. 42 C.F.R. § 441.510 (d). ↩︎
25. Prior years’ data was used to supplement missing data for CA, DC, HI, MN, and NM. ↩︎
26. Prior years’ data was used to supplement missing data for CA, DC, HI, MN, and NM. ↩︎
27. CT is one of a minority of states that elects the Section 209 (b) option, which allows states to use financial and functional eligibility criteria that differ from the federal SSI rules, as long as they are no more restrictive than the rules the state had in place in 1972. ↩︎
28. CMS, Special Terms and Conditions, Washington State Medicaid Transformation Project, #11-W-00304/0 (approved Jan. 9, 2017-Dec. 31, 2022), https://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Waivers/1115/downloads/wa/wa-mtp-extension-ca.pdf. The benefit package includes caregiver assistance services, caregiver training and education, specialized medical equipment and supplies, health maintenance and therapy supports (including adult day health services and counseling), and personal assistance services (including personal care, transportation, home-delivered meals, and home modifications. Id. The transportation benefit is currently limited to transportation in conjunction with delivery of another covered benefit. WA has a pending wavier amendment that would expand the transportation benefit to including community events, regardless of whether they are in conjunction with delivery of another covered service, with a goal of increasing community access and decreasing social isolation. WA State Health Care Authority, Dep’t of Soc. and Health Servs., WA State Medicaid Transformation Project Section 1115 Demonstration Amendment Request at p. 6 (Jan. 15, 2021), https://www.medicaid.gov/medicaid/section-1115-demonstrations/downloads/wa-medicaid-transformation-pa4.pdf. ↩︎
29. OR Health & Science Univ. Ctr. for Health Systems Effectiveness, Medicaid Transformation Project Evaluation Interim Report, prepared for WA State Health Care Auth. (Dec. 2020), https://www.medicaid.gov/medicaid/section-1115-demonstrations/downloads/wa-medicaid-transf-cms-approved-interim-evaluation-report.pdf. ↩︎
30. CMS Special Terms and Conditions, MN 2020 System Reform Demonstration, No. 11-W-00286/5 (approved Feb. 2, 2020), https://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Waivers/1115/downloads/mn/mn-reform-2020-ca.pdf. The benefit package includes adult day services, family caregiver training and education, case management, chore services, companion services, consumer-directed community supports, home health services, home-delivered meals, homemaker services, environmental accessibility adaptations, nutrition services, personal care, respite, skilled and home care nursing, specialized equipment and supplies, non-medical transportation, tele-home care, and individual community living supports. Monthly service costs must not exceed 75% of the budget amount available for a person with similar assessed needs who is enrolled in MN’s Section 1915 (c) elderly care waiver. Id. This approval is not reflected in our survey total. We anticipate that the state will begin reporting data for this new waiver in our next survey. ↩︎
31. Cost sharing is 5% of average monthly service costs for enrollees from 100-149% FPL, 15% for enrollees from 150-199% FPL, and 30% for enrollees at or above 200% FPL. Id. ↩︎
32. OR Health Authority, Oregon Project Independence and Family Caregiver Assistance Program 1115 Demonstration Waiver Application (Nov. 1, 2021), https://www.medicaid.gov/medicaid/section-1115-demonstrations/downloads/or-1115s-projectindependence-application-pa.pdf. Enrollees would receive a limited benefit package of in-home supports or supports for people with family caregivers. Id. ↩︎
33. The 12 states without any waiver waiting lists are AZ, DC, DE, HI, ID, MA, NJ, NY, RI, SD, VT, and WA. Prior years’ data was used to supplement missing data for CA, DC, HI, MN, and NM. ↩︎
34. This total reflects individuals on waiting lists in 39 states reporting waiting lists for Section 1915 (c) and/or Section 1115 HCBS waivers. It includes partial FY 2018 data for California, which reported waiting list enrollment for its Section 1915 (c) waivers serving seniors and/or adults with physical disabilities and people with HIV/AIDS, but did not report enrollment on its Section 1115 waiting list for seniors and adults with physical disabilities. FY 2018 data were also used for CT (children and adults with physical disabilities only), MN, NC (I/DD only), NH, and NM. ↩︎
35. The 2018 total is revised, as of September 2021, based upon new waiting list totals in three waivers in Texas. The state attributes this change to improved reporting methodology. Additionally, Ohio (-66,500) and Louisiana (-31,000) reported large declines in waiting list numbers after adopting changes in their assessment policies. Both states instituted a new waiting list assessment tool for individuals in need of I/DD waiver services beginning in FY 2018. Ohio applied its new assessment tool to people on the waiting list prior to FY 2018 and anyone newly requesting waiver services. Based on the outcome of the assessment, individuals were either removed from the waiting list entirely (without receiving services), assigned a waiver slot, or were placed on a new waiting list. Louisiana applied its new assessment tool to people who were on its I/DD waiver waiting list to determine whether they require services now or in the near future to avoid institutionalization. Under the new policy, Louisiana offers waiver slots to people with the highest assessment score, and others are rescreened at regular intervals or upon request. The state does not consider these individuals to be on a waiting list for services. ↩︎
36. Of the 39 states reporting one or more waivers with a waiting list, 29 reported average wait time for at least one waiver with a waiting list (AK, AR, CA, CO, CT, FL, IL, IN, IA, KS, KY, LA, MD, MI, MO, MS, MT, NE, NV, NC, ND, OK, OR, PA, SC, TX, WI, WV, and WY), and 10 (AL, GA, ME, MN, NH, NM, OH, TN, UT, VA) did not report average wait time for any waivers with waiting lists. ↩︎
37. The five states that did not respond to this survey question are CA, GA, MN, NH, and NM. ↩︎
38. Within a state, some waivers prioritize only one group, while other waivers may give priority to more than one group. ↩︎
39. Within a state, some waivers may not have reserve capacity, while other waivers do. States with any reserve capacity in a waiver were counted in this total. Six waiting list states do not reserve capacity (IL, MI, NV, OH, OR, and UT) in any HCBS waivers. Five states did not respond to this survey question (CA, GA, MN, NH, and NM). ↩︎
40. However, states can limit the number of people receiving Section 1915 (i) state plan services by restricting functional eligibility criteria for future beneficiaries if the number of people receiving services will exceed the state’s initial estimate. ↩︎
41. Prior years’ data was used to supplement missing data for DC, GA, HI, MN, NH, NM, NY, and TX. ↩︎
42. Prior years’ data was used to supplement missing data for DC, GA, HI, MN, NH, NM, NY, and TX. ↩︎
43. Personal care services exclude skilled services that only may be performed by a health professional. CMS State Medicaid Manual § 4480, https://www.cms.gov/Regulations-and-Guidance/Guidance/Manuals/Paper-Based-Manuals-Items/CMS021927.html. ↩︎
44. Id. ↩︎
45. CFC enrollment in AK began in 2019. ↩︎
46. CFC services include hands-on assistance, supervision or cueing, and services for the acquisition, maintenance, and enhancement of skills necessary for individuals to accomplish self-care, household activity, and health-related tasks. Health-related tasks are those that can be delegated by a licensed health care professional to be performed by an attendant. ↩︎
47. Backup systems include electronic devices as well as individuals identified by the beneficiary to ensure continuity of services. ↩︎
48. Transition costs may include rent and utility deposits, first month’s rent and utilities, bedding, basic kitchen supplies, and other required necessities. ↩︎
49. These services may be covered to the extent that expenditures otherwise would be made for human assistance. ↩︎
50. The remaining CFC states (AK, CA, MT, NY, TX) did not respond to this survey question. ↩︎
51. Prior years’ data was used to supplement missing data for AR, CA, CT, DC, and TX. ↩︎
52. AR did not respond to this survey question. Data were supplemented from state plan amendment #AR 18-0017, approved effective 3/1/19, https://www.medicaid.gov/sites/default/files/State-resource-center/Medicaid-State-Plan-Amendments/Downloads/AR/AR-18-017.pdf. ↩︎
53. Five of 13 states did not respond to this survey question. The states that did not respond include AR, CA, CT, DC, and TX. ↩︎
54. See Victoria Peebles and Alex Bohl, The HCBS Taxonomy: A New Language for Classifying Home and Community-Based Services, Medicare & Medicaid Research Review, vol. 4, no. 3 (CMS Office of Info. Products & Data Analytics, 2014), http://dx.doi.org/10.5600/mmrr.004.03.b01. ↩︎
55. These findings include Section 1915 (c) and Section 1115 HCBS waivers. Section 1115 waiver services were assigned to the main population targeted by the waiver: seniors/adults with physical disabilities and/or people with I/DD. Prior years’ data was used to supplement missing data for CA, DC, HI, MN, and NM. ↩︎
56. KFF, Premiums and Cost-Sharing in Medicaid (Feb. 2013), https://modern.kff.org/medicaid/issue-brief/premiums-and-cost-sharing-in-medicaid/. ↩︎
57. PETI rules apply to individuals are eligible for Medicaid by reason of a Section 1915 (c) HCBS waiver because they would be eligible under the Medicaid state plan if institutionalized, meet an institutional level of care, and would be institutionalized if not receiving waiver services. 42 U.S.C. § 1396a (a)(10)(A)(ii)(VI). They sometimes are referred to as the “217-group,” because they are described in 42 C.F.R. § 435.217. ↩︎
58. 42 C.F.R. § 435.726 (c). ↩︎
59. CA, FL, GA, KS, ME, MS, SC, and VA. ↩︎
60. Prior years’ data was used to supplement missing data for DC, GA, HI, MN, NH, NM, NY, and TX. ↩︎
61. FL’s $2 copayment is per day, per provider, not per visit. ↩︎
62. AK, AR, CA, CT, DE, GA, HI, ID, IL, IA, KS, KY, LA, MD, MA, MN, MO, NE, NJ, ND, OH, OK, OR, RI, SD, TN, TX, VT, VA, WA, and WI. ↩︎
63. AZ, HI, IA, KY, LA, MD, MA, NJ, OK, OR, SD, TN, TX, WA, and WI. ↩︎
64. CA and RI. ↩︎
65. CMS Special Terms & Conditions, Alabama Community Waiver Program, No. 11-W-00358/6 (approved Oct. 21, 2021-Sept. 30, 2026), https://www.medicaid.gov/medicaid/section-1115-demonstrations/downloads/al-community-waiver-prog-ca.pdf. ↩︎
66. Most states that use capitated managed care delivery systems for HCBS waiver services also use capitated managed care to deliver state plan HCBS. A small number of states report using capitated managed care to deliver state plan HCBS (primarily home health state plan services) but deliver HCBS waiver services on a FFS basis (data not shown). ↩︎
67. CMS Special Terms and Conditions, Building and Transforming Coverage, Services, and Supports for a Healthier Virginia, No. 11-W-00297/3 (approved 1/1/20, amended 7/9/20) https://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Waivers/1115/downloads/va/va-gov-access-plan-gap-ca.pdf. This approval is not reflected in our survey total. We anticipate that the state will begin reporting data for this new waiver in our next survey. ↩︎
68. These include a behavioral health need, two activity of daily living needs, or a complex physical health including developmental disability. Id. ↩︎
69. These include homelessness or risk of homelessness, history of frequent or lengthy institutional stays or emergency room visits, criminal justice history, or history of housing loss due to behavioral health issues. Id. ↩︎
70. These include unable to be gainfully employed for at least 90 consecutive days in past 12 months due to mental or physical impairment; unable to obtain or maintain employment due to age, physical/sensory disability or moderate to severe brain injury; more than one inpatient or outpatient SUD service in past two years; or at risk of mental illness and/or SUD deterioration including one or more of the following:  persistent or chronic risk factors such as social isolation due to lack of family or social supports, poverty, criminal justice involvement or homelessness; mental illness or SUD care requires multiple provider types (behavioral health, primary care, LTSS, or other supportive services); past psychiatric history with ongoing treatment and supports necessary to ensure functional improvement; or dysfunction in role performance including one or more of the following:  behaviors that disrupt employment or schooling or put employment at risk of termination or school suspension; history of multiple terminations from work or school suspensions/expulsions; cannot succeed in structured work or school setting without additional supports or accommodations; or performance significantly below expectation for cognitive/developmental level). Id. ↩︎
71. Of the 50 states that allow self-direction in at least one waiver, 34 states provided the number of people who self-direct services (AL,CO, CT, DE, ID, IL, IN, IA, KS, KY, LA, MD, MA, MI, MS, MO, MT, NJ, NY, NC, ND, OH, OK, OR, PA, SC, SD, TN, UT, VT, VA, WV, WI, WY). The 16 states that allow self-direction but did not provide the number of people doing so are AZ, AR, CA, DC, FL, GA, HI, ME, MN, NE, NV, NH, NM, RI, TX, and WA. ↩︎
72. Of the 37 states that offer the personal care state plan option, 19 allow self-direction. Twelve of the 19 states provided the number of people who self-direct services (CA, ID, ME, MA, MO, MT, NE, NJ, OK, UT, VT, and WA). The seven states that allow self-direction but did not provide the number of people doing so are AK, AR, MN, NV, NH, OR, and TX. ↩︎
73. Other waiver target populations (children who are medically fragile or technology dependent, people with traumatic brain or spinal cord injuries, people with mental illness, and people with HIV/AIDS) account for a very small share (together about 1%) of people self-directing HCBS waiver services. ↩︎
74. Prior years’ HCBS waiver data was used for CA, DC, HI, NM, and MN. Prior year’s HCBS state plan services data was used for DC, GA, HI, MN, NH, NM, NY, and TX. ↩︎
75. Self-direction is a required part of the CFC benefit. Five CFC states (AK, CA, MD, OR, and WA) reported that they offer self-direction. The remaining CFC states (CT, MT, NY, TX) did not respond to this survey question. ↩︎
76. The 32 states that allow legally responsible relatives to be paid providers for waiver services are AL, AK, AR, CO, DE, FL, HI, ID, IL, IN, KS, KY, ME, MD, MN, MO, MT, NH, NM, NC, ND, OH, OK, PA, SD, TN, UT, VT, VA, WV, WI, and WY. The 11 states that allow legally responsible relatives to be paid providers for personal care state plan services are AK, AR, CA, ID, IN, IA, MN, MT, NJ, OR, and VT. ↩︎
77. A total of 39 states used Appendix K authority to temporarily permit payment for services rendered by family caregivers or legally responsible relatives in some or all Section 1915 (c) waivers, as of July 1, 2021. KFF, Medicaid Emergency Authority Tracker:  Approved State Actions to Address COVID-19, https://modern.kff.org/coronavirus-covid-19/issue-brief/medicaid-emergency-authority-tracker-approved-state-actions-to-address-covid-19/. ↩︎
78. Prior years’ data was used to supplement missing data for CA, DC, HI, NM, and MN. ↩︎
79. Prior years’ data was used to supplement missing data for DC, GA, HI, MN, NH, NM, NY, and TX. ↩︎
80. The EVV requirement was part of the 21st Century Cures Act and applies to all personal care and home health services provided under state plan or waiver authority. Specifically, EVV applies to personal care services provided under Sections 1905 (a)(24), 1915 (c), 1915 (i), 1915 (j), 1915 (k), and Section 1115 and to home health services provided under 1905 (a)(7) or a waiver. 42 U.S.C. § 1396b (l)(5)(B) and (C). ↩︎
81. The original legislation required states to comply with EVV requirements for personal care services by January 1, 2019, but subsequently was amended to extend the date to January 1, 2020. 21st Century Cures Act, § 12006, 130 STAT. 1033 (Dec. 13, 2016), https://www.govinfo.gov/content/pkg/PLAW-114publ255/pdf/PLAW-114publ255.pdf. ↩︎
82. Effective January 1, 2021, a 0.5% FMAP reduction is applied to certain personal care services expenditures for states without compliant EVV systems. ↩︎
83. 42 U.S.C. § 1396b (l)(5)(A); see also CMCS Informational Bulletin, Electronic Visit Verification (May 16, 2018), https://www.medicaid.gov/federal-policy-guidance/downloads/cib051618.pdf; see generally Medicaid.gov, Electronic Visit Verification (EVV) (last accessed Jan. 21, 2022), https://www.medicaid.gov/medicaid/hcbs/guidance/electronic-visit-verification/index.html. ↩︎
84. CMCS Informational Bulletin, Electronic Visit Verification (May 16, 2018), https://www.medicaid.gov/federal-policy-guidance/downloads/cib051618.pdf. ↩︎
85. 46 states responded to this survey question. The 5 states that did not are DC, GA, HI, MN, and NM. ↩︎
86. 42 C.F.R. § 447.204. ↩︎
87. 20 of 51 states responded to the survey question about reimbursement for home health agencies. ↩︎
88. 26 states responded to the survey question about reimbursement for registered nurses and 25 states responded to the question about reimbursement for home health aides. ↩︎
89. 22 of 37 states responded to the survey question about reimbursement for personal care providers. ↩︎

The COVID-19 pandemic brought new focus to the long-standing unmet need for home and community-based services (HCBS) among seniors and people with disabilities and direct care workforce shortages. Recognizing Medicaid’s role as the primary payer for HCBS, the American Rescue Plan Act (ARPA) temporarily increased federal funding to support Medicaid HCBS. The Build Back Better Act, passed by the House in November 2021, would provide $150 billion in new federal funds for Medicaid HCBS, including a permanent increase in the federal matching rate. This issue brief presents FY 2020 state-level data on the number of people receiving Medicaid HCBS and HCBS spending. This is the latest data available, and the first since the onset of the COVID-19 pandemic. The data were collected in KFF’s 19^th survey of state officials administering Medicaid HCBS programs in all 50 states and DC. A related brief presents the latest data and highlights themes in key state policy choices about optional HCBS. Key findings include the following:

• Nationally, 3.0 million people receive HCBS through waivers, and over 2.5 million people receive HCBS as part of the state plan benefit package (primarily home health and personal care services). The data do not allow us to present a total number of people who receive HCBS because some people receive services through both waivers and state plan benefits. Most people receiving HCBS get services that are provided at state option, which results in substantial variation among states.
• If passed, the BBBA would provide states with permanent enhanced federal matching funds for HCBS, which could allow them to serve more people. States may be more likely to increase the number of people receiving waiver services (which can be capped) if they know they can count on enhanced federal funds without an expiration date. The new funding also could enable states to offer optional services that they do not currently provide. To receive BBBA funds, states would have to assess the current availability of HCBS and identify access barriers to address.
• Joint federal and state Medicaid HCBS spending totaled $116 billion in FY 2020, with the vast majority (96%) for optional services. Waivers continue to comprise the majority of people receiving HCBS and spending. Among waiver target populations, spending for people with intellectual and developmental disabilities (I/DD) is disproportionate to the number of people served because per person costs for this population ($48,900) are higher than per person costs for seniors and adults with physical disabilities ($17,600). Under federal law, services in nursing homes are mandatory, but most HCBS are optional. According to other data, in FY 2019, spending on HCBS accounted for 59% of total Medicaid long-term services and supports (LTSS) spending. The trend toward increased HCBS spending has occurred over the last decade, and interest in expanding HCBS as an alternative to institutional LTSS has increased due to the pandemic.
• As passed by the House, BBBA would provide states with an additional six percentage points on their current federal matching rate for HCBS, an estimated $150 billion in new federal funds over 10 years. Increased federal funds without an expiration date could allow states to make longer term investments needed to expand HCBS (by serving more people and/or offering additional services) and support the direct care workforce (by increasing provider payment rates and requiring providers in turn to raise worker wages and supporting worker training).

Looking ahead, the COVID-19 pandemic and the aging population are expected to continue to influence Medicaid HCBS. Substantial variation in state HCBS eligibility, spending, and benefits persists across states. Over the past year, states have received temporary enhanced federal HCBS funding from the ARPA. Permanent enhanced funding for Medicaid HCBS, passed by the House and pending consideration in Senate in the Build Back Better budget reconciliation package, could support state efforts to not only recover from the pandemic but also improve the HCBS delivery infrastructure and expand services to fill existing and anticipated unmet needs. FY 2020 data about the number of people receiving HCBS and HCBS spending may be the baseline from which to assess the impact of ARPA, and if passed, Build Back Better Act, funds in terms of both expanding the number of people served and expanding the scope of services for people already receiving some HCBS who may still have unmet needs.

Introduction

The COVID-19 pandemic has disproportionately affected seniors and people with disabilities who rely on long-term services and supports (LTSS) to meet daily self-care and independent living needs and the direct care workers who provide these services. As the primary source of funding for home and community-based services (HCBS), state Medicaid programs have faced long-standing challenges related to the aging population, direct care workforce shortages, and an insufficient supply of affordable accessible housing. All of these challenges pre-dated and have been intensified by the pandemic. At the same time, existing financing sources have been insufficient to meet the need for HCBS. In an October 2021 KFF poll, 18% of adults said that they or a family member need new or additional support from paid nurses or aides beyond what they currently receive. Cost is the most common reason cited by people who have not received needed support. Private insurance and out-of-pocket spending account for small shares of HCBS financing compared to Medicaid (Figure 1),¹  and Medicare coverage is limited to short-term post-acute — not long-term — care.

Though Medicaid finances the majority of HCBS, the optional nature of most aspects of Medicaid HCBS eligibility and benefits results in substantial variation across states. State Medicaid programs must cover LTSS in nursing homes, while nearly all HCBS are optional. States have made significant shifts in addressing this historical bias toward institutional LTSS, with spending on HCBS surpassing spending on institutional care for the first time in FY 2013.²  The rate of the increase in the share of LTSS spending devoted to HCBS appears to have slowed in FY 2017 and FY 2018, at least in part due to the omission of data from some states.³  HCBS account for 59% of LTSS spending in FY 2019, the highest share to date, though the national data mask notable state-level variation (Figure 2).⁴ 

This issue brief presents FY 2020 state-level data on the number of people receiving Medicaid HCBS and HCBS spending. This is the latest data available, and the first since the onset of the COVID-19 pandemic. The data were collected in KFF’s 19^th survey of state officials administering Medicaid HCBS programs in all 50 states and DC, fielded from March through August 2021.⁵  An earlier brief presented survey findings about state policies adopted in response to the pandemic and the pandemic’s impact on people receiving Medicaid HCBS and providers. A related brief presents the latest data and highlights themes in 10 key state policy choices about optional HCBS.

Overall, 47 states responded to this year’s survey, though response rates for particular questions varied.⁶   Prior years’ data is used to supplement missing data for states that did not submit complete survey responses, as indicated in the Table Notes. In the few instances where prior years’ data is unavailable, we indicate when state-level data are omitted from totals. The survey findings encompass four Medicaid HCBS state plan benefits (home health, personal care, Section 1915 (i), and Community First Choice (CFC)) and two waiver authorities (Section 1915 (c) and Section 1115).⁷  Table 1 describes each HCBS authority, and Appendix Tables 1 through 6 contain detailed state-level data to accompany our findings.

This year, we expanded the scope of the survey to include four additional state plan HCBS benefits:  private duty nursing, case management, rehabilitative services, and Program for All-Inclusive Care for the Elderly (PACE). These benefits account for a smaller share of people receiving Medicaid HCBS and spending compared to the benefits traditionally encompassed in our survey, yet they contribute to a more complete picture of Medicaid’s role in providing HCBS for seniors and people with disabilities. While we do not include these additional benefits in our main survey findings due to incomplete responses, Appendix Tables 7 through 10 provide state-level data about the number of people receiving these services and spending for states that responded to the new questions.

How Do People Access Medicaid HCBS?

There are multiple pathways through which seniors and people with disabilities can receive Medicaid HCBS. Depending on states’ choices about which optional Medicaid eligibility pathways and benefits to offer, some people may have their HCBS needs met through the state plan benefit package alone, while others may need to access a waiver.

Traditionally, Medicaid benefits are provided through the state plan benefit package, which can include HCBS. Nearly all HCBS (except home health state plan services) are offered at state option. States can choose to provide a variety of HCBS -- such as personal care to help with bathing or preparing meals, therapies to help people regain or acquire self-care and independent living skills, and assistive technology – in their state plan benefit package. People can gain access to state plan benefits, including HCBS, through Medicaid eligibility pathways based on low income (including the ACA Medicaid expansion), old age, or disability. State plan benefits are provided to all Medicaid enrollees for whom they are medically necessary.⁸  Table 1 below describes the various HCBS benefit types.

States also can use waivers to provide Medicaid HCBS. HCBS waivers allow states to expand financial eligibility for HCBS and offer an HCBS benefit package targeted to a specific population, such as people with intellectual or developmental disabilities (I/DD) or people with physical disabilities. Unlike state plan benefits, waivers allow states to limit the number of people served.

How Many People Receive Medicaid HCBS?

The vast majority of people receiving Medicaid HCBS receive benefits provided at state option. The number of people receiving Medicaid HCBS ranges from nearly 166,000 receiving Section 1915 (i) state plan services to 1.9 million receiving Section 1915 (c) waiver services (Figure 3 and Appendix Table 1).⁹  The total number of people receiving HCBS across all authorities is not presented because individuals may receive services under more than one authority. Among the state plan HCBS authorities, the greatest number of people receive personal care services, followed by home health services.¹⁰  Waivers continue to be the most commonly used optional HCBS authority, with all states offering at least one HCBS waiver. Personal care services are the most commonly offered HCBS state plan option. Fewer states offer Section 1915 (i) or CFC (Figure 3 and Appendix Table 1).

How Much Does Medicaid Spend on HCBS?

Services provided at state option account for nearly all HCBS spending, with just four percent of total HCBS spending devoted to mandatory home health state plan services.¹¹  Medicaid HCBS spending totaled nearly $116 billion in FY 2020 (Figure 4 and Appendix Table 2).¹²  Waivers make up over two-thirds of total HCBS spending, while spending under a state plan authority is under one-third of total HCBS spending.¹³  Among the state plan HCBS authorities, personal care services and CFC account for the largest shares of spending (Figure 4).

Per person spending varies among the different HCBS authorities, with per person spending for Section 1915 (c) HCBS waivers generally higher than per person spending for state plan HCBS (Figure 5 and Appendix Table 3). HCBS waivers generally have a higher per person cost compared to state plan HCBS because waivers include a benefit package with multiple types of services as opposed to the single type or narrower range of services typically provided in a state plan category. Additionally, waivers generally require individuals receiving services to meet an institutional level of care and therefore are likely to serve people with more extensive, and costlier, needs. Per person spending for CFC state plan services is similar to per person spending for waivers, likely reflecting the greater intensity of these attendant services compared to other types of state plan HCBS. Relatively lower per person spending on home health state plan services compared to other authorities may reflect shorter periods of utilization compared to people receiving Section 1915 (c) waiver services who typically do so over an extended period, due to chronic long-term needs.

How Have HCBS Changed from FY 2019 to FY 2020?

Nationally, there was modest spending growth and modest changes in the number of people receiving HCBS from FY 2019 to FY 2020, though some states experienced larger changes. States that experienced changes frequently attributed them to the COVID-19 pandemic. Some states cited the pandemic as driving increases in the number of people served and/or spending on state plan HCBS, while other states identified the pandemic as contributing to decreases in these areas. States identified a growing senior population and the pandemic as driving increases in the number of people served and/or spending in HCBS waivers. Very few states identified downward pressures leading to decreases in the number of people served or spending in HCBS waivers.

States that experienced growth in the number of people served and/or spending in HCBS waivers from FY 2019 to FY 2020, and provided an explanation for the change include the following:

• Pennsylvania added 32,000 new people to its Section 1915 (c) waiver serving seniors and non-elderly adults with physical disabilities, leading to a 28% increase in people served and a 39% increase ($2.1 billion) in spending.
• Washington’s Section 1115 HCBS waiver grew by 800 people (27%) and spending increased by $9.6 million (41%), attributed to a growing senior population and the pandemic.
• Delaware experienced a 16% increase (258 people) in the number of people served in its Section 1915 (c) waiver for people with I/DD, as a result of expanding eligibility to individuals living with family members at home. Delaware also attributed a 12% increase ($18.6 million) in spending for this waiver to an increased need for behavioral support services.
• New Jersey increased the number of people served by 10% (2,700) in its Section 1115 HCBS waiver serving seniors, non-elderly adults with physical disabilities, and people with I/DD. Despite the increase in the number of people served, spending growth was negligible.
• New York added 29,000 new people (7%) to its Section 1115 HCBS waiver serving seniors, non-elderly adults with physical disabilities, and people with I/DD. This resulted in a 17% increase ($1.6 billion) in spending.

States that experienced an increase in the number of people served and/or spending for state plan HCBS from FY 2019 to FY 2020, and provided an explanation for the change include the following:

• Idaho added 11,900 people receiving Section 1915 (i) HCBS (22%), citing population growth, adoption of the ACA Medicaid expansion, the COVID-19 public health emergency (PHE), and increased need for behavioral health services for children with serious emotional disturbance.
• Ohio had 6,000 more people receiving Section 1915 (i) services (32%), due to increased provider and community awareness and increased need due to a high prevalence of chronic conditions and severe and persistent mental illness.

States that experienced a decrease in the number of people served and/or spending for state plan HCBS from FY 2019 to FY 2020, and provided an explanation for the change include the following:

• Iowa had 2,000 fewer people receiving state plan home health services (-14%) and 200 fewer people receiving Section 1915 (i) services (-2%), attributed to the pandemic and direct care workforce shortages which decreased in-home service utilization.
• Nevada had 1,300 fewer people receiving home health state plan services (-82%), noting that individuals sought to decrease services due to fear of infection during the pandemic.

How Many People Are Served and How Much is Spent, by Target Population?

There are two HCBS authorities that allow states to target services to a specific population of seniors and/or people with disabilities (Table 1). States use Section 1915 (c) waivers to offer an HCBS benefit package targeted to a specific population who would otherwise need institutional services.¹⁴  The Section 1915 (i) state plan option allows states to offer an HCBS benefit package targeted to a specific population who has functional needs that are less than an institutional level of care. Below, we present findings about the number of people served and spending for these authorities by target population.

Section 1915 (c) Waivers

People with I/DD, seniors, and people with physical disabilities account for the vast majority of people receiving services and spending in Section 1915 (c) waivers. However, because per person spending for people with I/DD is more than two and one-half times higher than per person spending for seniors and adults with physical disabilities, the I/DD population accounts for a disproportionately high share of total Section 1915 (c) waiver spending (67%), compared to the share of people with I/DD receiving Section 1915 (c) services (43%) (Figure 6 and Appendix Tables 4 and 5).¹⁵  Spending for people with I/DD is consistently disproportionate to the number of people served as a result of their generally more intensive needs. By contrast, seniors and people with physical disabilities comprise over half of all people receiving Section 1915 (c) waiver services and 30 percent of spending.¹⁶  Per person spending for other waiver populations varies, led by over $47,000 for people with traumatic brain or spinal cord injuries (TBI/SCI),¹⁷  with relatively lower amounts for children who are medically fragile or technology dependent,¹⁸  people with HIV/AIDS,¹⁹  and  people with mental health disabilities²⁰  (Figure 7 and Appendix Table 6). However, these four groups combined represent a small share of people receiving Section 1915 (c) waiver services and spending.

Section 1915 (i) State Plan Option

People with I/DD, primarily in California, account for the majority of both people receiving services and spending in the 13 states offering the Section 1915 (i) state plan option.²¹  Similar to the pattern in Section 1915 (c) waivers, per person spending for people with I/DD receiving Section 1915 (i) services is more than twice as high ($5,400) as per person spending for seniors and adults with physical disabilities ($2,400). However, unlike Section 1915 (c) waivers, seniors and adults with physical disabilities account for very small shares of people receiving Section 1915 (i) services and spending.²²  People with mental health disabilities are the second largest target population of those receiving services and spending under Section 1915 (i), with per person spending at $3,600.²³  Ohio serves the largest number of individuals (25,000) with mental health disabilities through Section 1915 (i), while Iowa comprises most of the spending for this population ($110 million). Lower per person spending for Section 1915 (i) state plan HCBS compared to Section 1915 (c) waivers could reflect a more limited scope benefit package and/or the fact that people receiving Section 1915 (i) services have fewer and/or less intensive needs (less than an institutional level of care) than those receiving Section 1915 (c) waiver services (who must meet an institutional level of care).

Looking Ahead

While there was modest spending growth and modest changes in the number of people receiving HCBS nationally from FY 2019 to FY 2020, some states experienced larger changes. States that experienced changes attributed them to the COVID-19 pandemic and resulting PHE, along with an aging population. Both of these factors are expected to continue to influence Medicaid HCBS, as states respond to the pandemic’s ongoing effects and look ahead to the eventual unwinding of PHE emergency authorities and the growing unmet need for HCBS. Across states, substantial variation persists in optional policy choices related to HCBS and in the share of LTSS spending devoted to HCBS compared to institutional care.

Congress has provided states with temporary enhanced federal funds for Medicaid HCBS, which can help states respond to the pandemic, though states’ ability to make longer-term systemic changes to expand HCBS and the direct care workforce may depend on whether Congress adopts a permanent federal funding increase for HCBS. The American Rescue Plan Act (ARPA), passed in March 2021, provides states with temporary enhanced federal HCBS funding, available for 12 months. The Build Back Better budget reconciliation package would provide $150 billion in new federal funds for Medicaid HCBS, including a permanent increase in federal matching funds for HCBS. This legislation was passed by the House in November 2021, but its future remains uncertain in the Senate. Permanent enhanced funding for Medicaid HCBS, if authorized by Congress, could support state efforts to not only recover from the pandemic but also improve the HCBS delivery infrastructure and expand services to fill existing unmet needs and prepare to serve the growing aging population. FY 2020 data about the number of people receiving HCBS and HCBS spending may be the baseline from which to assess the impact of ARPA, and if passed, the Build Back Better Act, HCBS funds in terms of both expanding the number of people served and expanding the scope of services for people already receiving some HCBS who may still have unmet needs.

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Table Notes

Arkansas: Home health data are from 2017. Personal care data are from 2018. Waiver data are from 2016 (#936 I/DD) and 2019 (#195 seniors/adults with physical disabilities, #400 seniors/adults with physical disabilities).

California: Home health data are from 2016. 1915 (i) and waiver data are from 2018.

Connecticut: CFC, 1915 (i), and waiver data are from 2018 (#301 adults with physical disabilities, #302 TBI/SCI, #993 I/DD, #4110 children).

DC: Home health, personal care, and waiver data are from 2017. 1915 (i) data are from 2016.

Georgia: Home health and waiver data are from 2018.

Hawaii: Section 1915 (c) and Section 1115 waiver data are from 2018.

Kansas: Home health data are from 2018.

Illinois: Waiver data are from 2018 (#143 seniors) and 2019 (#142 adults with physical disabilities, #202 HIV/AIDS, #278 children, #329 TBI/SCI, #350 I/DD, #464 I/DD, #473 I/DD).

Indiana: Waiver data are from 2019 (#378 I/DD, #387 I/DD).

Maine: Waiver data are from 2018 (#467 I/DD) and 2019 (#159 I/DD, #276 seniors/adults with physical disabilities, #995 I/DD, #1082 TBI/SCI).

Massachusetts: Waiver data are from 2018 (#59 seniors/adults with physical disabilities) and 2019 (#359 TBI/SCI, #826 I/DD, #827 I/DD, #828 I/DD, #1027 seniors/adults with physical disabilities, #1028 seniors/adults with physical disabilities, #40207 I/DD, #40701 TBI/SCI, #40702 TBI/SCI).

Michigan: Waiver data are from 2018 (#167 I/DD) and 2019 spending-only (#438 mental health, #4110 I/DD).

Minnesota: Home health, personal care, and waiver data are from 2018.

Nevada: 1915 (i) data are from 2018.

New Hampshire: Home health and personal care data are from 2015. Waiver data are from 2016 (#397 I/DD) and 2018 (#53 I/DD, #4177 TBI/SCI).

New Mexico: Home health and waiver data are from 2018.

New York: Home health and personal care data are from 2017.

North Carolina: Waiver data are from 2016 (#432 I/DD).

North Dakota: Waiver data are from 2019 spending-only (#568 children, #834 children, #842 I/DD).

Oregon: Home health data are from 2018. Waiver data are from 2019 (#117 I/DD, #375 I/DD, #565 children, #40193 children, 40194 I/DD).

South Carolina: Home health and waiver data are from 2018 (#237 I/DD, #675 children, #40181 seniors/adults with physical disabilities) and 2019 (#186 HIV/AIDS, #284 TBI/SCI, #405 seniors/adults with physical disabilities, #676 I/DD).

South Dakota: Home health and personal care data are from 2018.

Tennessee: Home health data are from 2018.

Texas: Home health, personal care, CFC, and 1915 (i) data are from 2018.

Virginia: Waiver data are from 2018 (#321 seniors/adults with physical disabilities).

1. These spending totals may not align with other sources due to differences in state reporting or which services are included in the definition of HCBS. ↩︎
2. Factors contributing to this trend include enrollee preferences for HCBS, the fact that states are encouraging HCBS as an alternative to typically more costly institutional care, and states’ community integration obligations under the Americans with Disabilities Act (ADA) and the Supreme Court’s Olmstead decision. In Olmstead, the Supreme Court held that the unjustified institutionalization of people with disabilities is illegal discrimination that violates the ADA. ↩︎
3. The FY 2017 and 2018 data omit California, Illinois, New York, North Carolina, and Virginia. ↩︎
4. The FY 2019 data omit California, Delaware, Illinois, and Virginia. ↩︎
5. Due to the pandemic, KFF did not survey states in calendar year 2020, so this year’s survey also collected FY 2019 data to account for the missed year. ↩︎
6. The four states that did not respond are Hawaii, District of Columbia, Minnesota, and New Mexico. In certain areas, states’ previously reported data and supplemental research by KFF helped to calculate national totals. ↩︎
7. Section 1115 HCBS waivers are included in our survey only if the state does not have an accompanying Section 1915 (c) waiver. ↩︎
8. However, states can limit the number of people receiving Section 1915 (i) state plan services by restricting functional eligibility criteria for future enrollees if the number of people receiving services will exceed the state’s initial estimate. ↩︎
9. Number of people served was not reported for CFC in NY and Section 1915 (i) in AR. ↩︎
10. These totals omit people receiving services in the following states that deliver state plan HCBS through Section 1115 capitated managed care waivers and cannot report the unduplicated number of people receiving state plan HCBS separate from the total number of people receiving Section 1115 waiver services:  AZ (home health), DE (home health and personal care), HI (home health), KS (personal care), NM (personal care), RI (home health and personal care). ↩︎
11. States report total spending for home health state plan services, which may include a small amount of spending for optional services. The home health state plan benefit must include nursing services, home health aide services, and medical supplies, equipment, and appliances. States also may choose to cover physical, occupational, and/or speech/language therapy as part of the home health state plan benefit. ↩︎
12. Spending data was not reported for CFC in NY and Section 1915 (i) in AR and DC. ↩︎
13. The home health and personal care state plan option totals omit spending for state plan HCBS in the following states that provide these services through Section 1115 capitated waivers and cannot report state plan HCBS spending separate from total Section 1115 waiver spending:  AZ (home health), DE (home health and personal care), HI (home health), KS (personal care), NM (personal care), RI (home health and personal care). ↩︎
14. States also may use Section 1115 HCBS waivers to target services to particular populations. We do no analyze Section 1115 waivers by target population because states may include more than one population within a single waiver; instead, we report total Section 1115 HCBS spending across all waiver populations. ↩︎
15. 47 states offer Section 1915 (c) waivers targeted to people with I/DD. The other four states (AZ, NJ, RI, and VT) serve their entire I/DD waiver populations under Section 1115. In addition, two states (NY and TN) serve some people with I/DD under Section 1115 and others under Section 1915 (c). ↩︎
16. 42 states offer Section 1915 (c) waivers targeted to seniors and/or adults with physical disabilities. The other nine states (AZ, DE, HI, NJ, NM, RI, TN, TX, and VT) serve all senior and adult with physical disabilities waiver populations under Section 1115. In addition, three states (CA, NY, and WA) serve some seniors and adults with physical disabilities under Section 1115 and others under Section 1915 (c). ↩︎
17. 21 states offer Section 1915 (c) waivers targeted to people with TBI/SCI. Another four states (DE, RI, VT, and WA) serve people with TBI/SCI under Section 1115. ↩︎
18. 18 states offer Section 1915 (c) waivers targeted to children who are medically fragile or technology dependent. Another two states (HI and RI) serve children who are medically fragile or technology dependent under Section 1115. ↩︎
19. Five states offer Section 1915 (c) waivers targeted to people with HIV/AIDS. Another three states (DE, HI, and RI) serve people with HIV/AIDS under Section 1115. ↩︎
20. 11 states offer Section 1915 (c) waivers targeted to people with mental health disabilities. Another two states (DE and RI) serve people with mental health disabilities under Section 1115. In addition, WA serves some people with mental health disabilities under Section 1115 and others under Section 1915 (c). ↩︎
21. These data include four states (CA, DE, ID, MS) that serve people with I/DD under Section 1915 (i). ID serves both people with I/DD and children with serious emotional disturbance under Section 1915 (i). ID did not report the number of people served and spending by target population, so all data are attributed to people with I/DD. ↩︎
22. Four states (CT-seniors only, DC, MI, NV) serve seniors and/or people with physical disabilities under Section 1915 (i). ↩︎
23. These data include four states (IA, IN, OH, TX) that serve people with mental health disabilities under Section 1915 (i). ID also serves children with serious emotional disturbance under Section 1915 (i) but was unable to report data by target population, so all ID Section 1915 (i) data are attributed its I/DD target population. AR also serves people with behavioral health needs under Section 1915 (i) but did not report the number of people served or spending. AR SPA #18-0017 (approved Dec. 19, 2018, effective March 1, 2019), https://www.medicaid.gov/sites/default/files/State-resource-center/Medicaid-State-Plan-Amendments/Downloads/AR/AR-18-017.pdf. ↩︎