Dental benefits are not generally covered by Medicare, except under limited circumstances, and many people on Medicare do not have any dental coverage at all. Some Medicare beneficiaries have access to dental coverage through other sources, such as Medicare Advantage plans, but the scope of dental benefits, when covered, varies widely and is often quite limited, which can result in high out-of-pocket costs among those with serious dental needs or unmet need.

Policymakers are now discussing options to make dental care more affordable by broadening dental coverage for people on Medicare. President Biden’s FY 2022 budget request includes as part of the President’s healthcare agenda “improving access to dental, hearing, and vision coverage in Medicare.” Senate Democrats recently announced an agreement to include Medicare expansions, including dental, vision, and hearing, as part of the budget reconciliation package, though details of the agreement have not yet been released. In 2019, the House of Representatives passed the Elijah E. Cummings Lower Drug Costs Now Act (H.R.3) that would add a dental benefit to Medicare Part B, along with a vision and hearing benefit, in addition to provisions to reduce prescription drug costs. Earlier this year, Representative Doggett, joined by 76 members of the House of Representatives, introduced the Medicare Dental, Vision, and Hearing Benefit Act (H.R. 4311) which would cover these benefits under Medicare Part B.

In light of these ongoing policy discussions, this brief provides new data on the share of Medicare beneficiaries with dental coverage, the share with a dental visit in the past 12 months, and out-of-pocket spending on dental care. It also takes a closer look at the scope of dental benefits offered to Medicare Advantage enrollees in individual plans in 2021. We focus on Medicare Advantage plans because they have become the leading source of dental coverage among Medicare beneficiaries. Our analysis draws from multiple datasets, including the Medicare Current Beneficiary Survey for information on dental visits and out-of-pocket dental costs and the Medicare Advantage Enrollment and Benefit files for data on individual Medicare Advantage plans. To present a more detailed picture of dental benefits beyond what’s available in these data sets, we examine dental coverage offered by 10 geographically dispersed Medicare Advantage plans offered by different insurers with relatively high enrollment that offer dental benefits (see Methodology and Appendix for more information).

Key Findings

• Nearly half of Medicare beneficiaries (47%), or 24 million people, do not have dental coverage, as of 2019.
• Almost half of all Medicare beneficiaries did not have a dental visit within the past year (47%), with higher rates among those who are Black (68%) or Hispanic (61%), have low incomes (73%), or who are in fair or poor health (63%), as of 2018.
• Average out-of-pocket spending on dental services among Medicare beneficiaries who had any dental service was $874 in 2018. One in five Medicare beneficiaries (20%) who used dental services spent more than $1,000 out-of-pocket on dental care.
• In 2021, 94% of Medicare Advantage enrollees in individual plans (plans open for general enrollment), or 16.6 million enrollees, are in a plan that offers access to some dental coverage. Among these Medicare Advantage enrollees:
  • Most (86%) of these enrollees are offered both preventive and more extensive dental benefits.
  • More than three in four (78%) Medicare Advantage enrollees offered more extensive coverage are in plans with annual dollar limits on dental coverage, with an average limit of $1,300 in 2021; more than half (59%) of these enrollees are in a plan with a maximum dental benefit of $1,000 or less.
  • Nearly two-thirds of enrollees (64%) with access to preventive benefits, such as oral exams, cleanings, and/or x-rays, pay no cost sharing for these services, though their coverage is typically subject to an annual dollar cap.
  • The most common coinsurance for more extensive dental services, such as fillings, extractions, and root canals, is 50%.
  • About 10% of Medicare Advantage beneficiaries are required to pay a separate premium to access any dental benefits.

Dental Coverage, Utilization and Out-of-Pocket Spending

Nearly 24 million people, or about half of all Medicare beneficiaries (47%), did not have any form of dental coverage in 2019 (Figure 1).

The remaining Medicare beneficiaries have access to dental coverage through Medicare Advantage plans, Medicaid, and private plans, including employer-sponsored retiree plans and individually purchased plans.

In 2019, 29% of all Medicare beneficiaries had access to some dental coverage through Medicare Advantage plans (including 3% of beneficiaries also eligible for Medicaid who had access to dental coverage through a Medicare Advantage plan). Another 16% had coverage through private plans. About 11% of Medicare beneficiaries had access to dental coverage through Medicaid (including the aforementioned who also have coverage through Medicare Advantage plans). With the rise of Medicare Advantage enrollment, a growing share of Medicare beneficiaries have access to some dental coverage through their Medicare Advantage plan, so the share of all Medicare beneficiaries with some dental coverage would likely be higher in 2021.

A prior KFF analysis of the 2016 Medicare Current Beneficiary Survey (MCBS) and other data sources indicated that nearly two-thirds of people on Medicare (65%) had no dental coverage that year. However, due to a data collection and processing issue subsequently identified by CMS, the estimates for private dental coverage derived from the MCBS were lower than they should have been by an unknown magnitude. CMS resolved this issue in 2017. Due to this and other methodological changes in our analysis, as explained in the methodology, estimates of the number of people on Medicare with dental insurance cannot be trended using our 2016 estimate.

Lack of dental care can exacerbate chronic medical conditions, such as diabetes and cardiovascular disease, contribute to delayed diagnosis of serious medical conditions, and lead to preventable complications that sometimes result in costly emergency room visits.¹  Limited or no dental coverage and cost concerns contribute to Medicare beneficiaries foregoing routine and other dental procedures.

Utilization. In 2018, half of Medicare beneficiaries did not have a dental visit (47%) – with even higher rates reported among those who are Black or Hispanic (68% and 61%, respectively) (Figure 2).

When we looked by race and gender, we found a larger share of Black and Hispanic women (64% and 59%, respectively) went without any dentist visit in the past year than White women (40%). The same pattern exists among men: a larger share of Black (74%) and Hispanic (64%) men than White men (44%) went without a dental visit.

Low-income beneficiaries are far less likely than higher-income beneficiaries to report a dental visit in the prior year. Nearly three-quarters (73%) of Medicare beneficiaries with incomes of less than $10,000 per year did not visit a dentist, as compared to 25% of beneficiaries with incomes above $40,000.

Health status was also correlated with dental care. Nearly two-thirds (63%) of all beneficiaries in fair or poor self-assessed health had a dental visit in the past year, as compared to 41% of beneficiaries in excellent, very good, or good health.

These relatively low rates of dental use are not attributable to a drop in utilization caused by the COVID-19 pandemic, as they are based on 2018 data, the most recent year available, which was prior to the pandemic.

Out-of-Pocket Spending. Most beneficiaries who received dental services in 2018 (88%) paid out of pocket for their care. Across all beneficiaries, average out-of-pocket spending on dental care was $454 in 2018, although this includes a large number of beneficiaries who did not have any dental care that year. Among the roughly half of all Medicare beneficiaries who used any dental services, average out-of-pocket spending on dental care was $874 in 2018. One in five beneficiaries who used dental services spent more than $1,000 out-of-pocket on dental care, including one in ten that spent more than $2,000 (Figure 3).

Medicare Advantage Dental Benefits

Medicare Advantage plans may provide extra (“supplemental”) benefits that are not covered under traditional Medicare, such as dental, vision, hearing, and fitness benefits. The cost of these benefits may be covered using rebate dollars. Plans can also charge additional premiums for such benefits. In 2021, 94% of Medicare Advantage enrollees in individual plans, have access to some dental coverage. The majority (86%) of these Medicare Advantage enrollees have access to a plan with more extensive coverage, while 14% had access to preventive coverage only. Preventive dental coverage under Medicare Advantage plans generally includes oral exams, cleanings, dental x-rays, and sometimes fluoride treatments. More extensive benefits cover a range of services, including restorative services (e.g., fillings), endodontics (e.g., root canals), periodontics (e.g., scaling and root planing), prosthodontics (e.g., dentures, dental implants), and oral surgery.

The Scope of Covered Dental Benefits Varies Across Medicare Advantage Plans

Virtually all Medicare Advantage enrollees in plans that offer access to dental benefits (including if they have to pay a premium for those benefits), have access to preventive services, including oral exams (100%), cleanings (100%), and x-rays (99%), although fewer enrollees have access to fluoride treatment (59%).

Service Limits. Medicare Advantage plans typically limit the frequency of obtaining certain covered services during defined time frames. For example, nearly all enrollees (88%) are in plans that have frequency limits on the number of cleanings, with the most common limit being twice per year. For other services, such as x-rays, the frequency limits vary more across plans. For example, 36% of enrollees are in plans that limit the number of x-rays to a specified time frame, with the most common limit being once per year.

Covered Services (Other Than Preventive). Among enrollees in plans that offer access to more extensive services, the type of covered services varies across plans: 96% of enrollees are in plans that offer restorative services, such as fillings; 83% are in plans that cover extractions; 76% are in plans that cover periodontics and/or prosthodontics; 64% are in plans that cover endodontics, such as root canals; and 60% are in plans that cover diagnostic services and/or non-routine services. However, we did not examine frequency limits for more extensive services because these service categories encompass a variety of treatments, and it is not always clear what an individual plan covers in each of these service categories.

like other dental benefits, coverage for dentures varies across plans

As part of the prosthodontics service category, some beneficiaries may have access to coverage for dentures, a commonly needed service among older adults. As of 2018, nearly 14% of adults 65 and older are edentulous, meaning they have no natural teeth. We were unable to determine specifics about denture coverage based on the analysis of national data, so we looked at the ten illustrative plans in more detail. Five of the ten plans specified that they covered dentures (partial and full) and each of these plans limit dentures to 1 set every 5 years (Appendix Table 1). Among these five plans, cost sharing imposed on beneficiaries for dentures ranges from no copayment to a $500 copayment, and 50% to 70% coinsurance. All of these cost-sharing amounts are for in-network dental providers. Four out of the five plans have annual caps toward covered services, while one plan does not specify if it has an annual cap. The other five plans that offered dental coverage did not specify if dentures were covered.

Medicare Advantage Plans That Offer Dental Benefits Typically Have an Annual Dollar Cap on Dental Coverage

Most Medicare Advantage enrollees have access to more extensive benefits and the majority (78%) of these enrollees are in plans that impose a maximum annual dollar cap on the amount the plan will pay for dental care. Some plans just cap the amount they will pay for the relatively extensive dental benefits (with no cap on preventive services), but the majority of enrollees are in plans that cap cost sharing for both preventive and more extensive services.

The average annual limit on dental coverage among plans that offer more extensive benefits is about $1,300 in 2021, and more than half (59%) of enrollees in these plans have dental benefits that are capped at $1,000 or less (Figure 4).

About 16% are in a plan that pays up to $500, while 22% of enrollees are in plans with a $2000 annual limit, and 8% of enrollees are in plans with a limit greater than $2,000 and up to $5,000. Coverage limits are far more common among plans that cover more extensive benefits than plans that cover only preventive services.

Preventive Services Are Often Covered Without Cost Sharing (Subject to Annual Dollar Limits); For More Extensive Dental Services, 50% Coinsurance and Caps Are the Norm

Medicare Advantage plans’ cost sharing for dental benefits varies across plans and by service category – some plans do not charge any cost sharing (primarily for preventive services), while others charge coinsurance and/or a flat copayment.

• Preventive Services. Nearly two-thirds of enrollees (64%) in plans with access to oral exams, cleanings, and/or x-rays do not pay cost sharing for these services, although the majority of these enrollees are in plans that have annual limits on covered preventive services. An additional 8% of enrollees may have preventive services bundled as part of an office visit, which means they may only pay cost sharing for the visit itself, or in other cases, may have additional cost sharing for each individual service. About 3% of enrollees are in plans that require them to pay some type of cost sharing, which varies across plans. About 25% are in plans that do not report their cost-sharing amounts for these preventive services.
• More Extensive Dental Services. For plans that offer more extensive benefits and require cost sharing, coinsurance is more common than copayments, and the most common coinsurance amount is 50% across the more extensive service categories, including restorative services, extractions, endodontics, periodontics, prosthodontics, non-routine services, and diagnostic services.
• Cost sharing for more extensive dental services varies across plans (and services) and are typically subject to annual plan limits. For example, 39% of enrollees that are offered endodontic services (e.g. root canals) are in plans that do not require cost sharing for these services, but the majority of these enrollees are subject to an annual maximum on dental coverage. Another 30% are required to pay coinsurance for endodontic services – most often 50% – and also typically with an annual maximum. Among the remainder, 15% are required to pay copayments for endodontic services, and 15% of plans did not include data on cost-sharing amounts.

Among the ten illustrative Medicare Advantage plans with dental coverage, only one charges any cost sharing for preventive services ($10 copayment per service), though almost all plans (7) include an annual limit. Among the nine plans that offer more extensive dental services, five of the plans charge coinsurance, each of which is subject to an annual plan limit, with coinsurance ranging from 20% to 70% depending on the service, with 50% as the most common coinsurance amount across service categories. One of the plans requires copayments for more extensive dental benefits that vary depending on the service category (no annual maximum specified). Two plans that cover more extensive services do not require coinsurance or copayments; one of these plans has an annual limit ($2,300), while the other does not specify an annual limit.

Some Medicare Advantage Enrollees Must Pay a Separate Premium for Any Dental Coverage

Overall, 10% of Medicare Advantage enrollees in individual plans are required to pay a monthly premium to access any dental benefits, either preventive benefits only or more extensive benefits. For these enrollees, premiums average $270 per year, ranging from about $108 per year to $692 per year.

Some Medicare Advantage enrollees are in a plan where they are offered an option to pay a premium for additional dental benefits beyond those included in their plan, and some of these plans include vision and hearing benefits as part of that coverage. Dental premiums are in addition to premiums for other Medicare Advantage benefits, as well as the Medicare Part B premium ($148.50 in 2021).

Medicare Advantage Plans Tend to Limit Coverage to In-Network Providers or Charge More for Out-of-Network Care

Medicare Advantage plans that offer dental coverage may require enrollees to receive all covered services from in-network dental providers or impose additional cost sharing for services delivered out-of-network. Due to data limitations, we were unable to assess cost-sharing requirements for out-of-network dental care across all Medicare Advantage plans, so instead reviewed the practices of the 10 Medicare Advantage plans selected for this analysis.

Among the 10 illustrative Medicare Advantage plans, three plans do not cover any out-of-network dental care (Appendix Table 1). Two plans pay for out-of-network care “up to a certain amount” (amount not specified), with the patient billed for the remainder of the charges. Two plans impose coinsurance ranging from 50-55% for more extensive services received out-of-network, and another plan imposes 30% coinsurance for preventive services and 70% coinsurance for more extensive services delivered out-of-network. One plan covers out-of-network dental care for emergencies only, paying a maximum of $100 for any other out-of-network service. Finally, one plan covers 100% of preventive services received out-of-network.

How Medicare Advantage Dental Coverage Compares to Affordable Care Act (ACA) Marketplace Coverage

As context for assessing the scope of dental benefits offered to Medicare Advantage enrollees, we reviewed dental coverage available to those who purchase dental coverage through the ACA Marketplaces. Adults purchasing plans through the ACA Marketplace may have dental coverage as part of their medical plan, or may choose to purchase separate stand-alone dental coverage. Among stand-alone dental plans available to adults on HealthCare.gov in 2021 (the federal marketplace), 100% cover routine preventive dental services (e.g. exams, cleanings, x-rays), 97% cover basic dental care (e.g. fillings, extractions, gum disease treatment, and root canals), and 81% cover major dental care (e.g. crowns, bridges, and dentures). Unlike the analysis of Medicare Advantage plans, the data on the ACA Marketplace is not enrollment-weighted.

Like Medicare Advantage plans, most plans have little to no cost sharing for preventive services. For adult routine dental coverage, most plans charge no coinsurance (57% of dental plans), followed by no coinsurance after meeting the dental deductible (32%). The median dental deductible for an individual is $50. For adult basic dental care, the most common cost sharing amount is 50% coinsurance after meeting the dental deductible (40% of plans that cover this benefit).

Similarly, for adult major dental care, the most common cost sharing amount is 50% coinsurance after meeting the deductible (58% of plans that cover this benefit). These most common coinsurance amounts for basic and routine dental coverage are the same as those in Medicare Advantage plans for more extensive services (50% coinsurance), though most Medicare Advantage plans do not first charge a deductible. All of these coinsurance rates for the ACA Marketplace dental plans are for in-network providers.

Most plans on the ACA Marketplace have an annual limit the plan will pay toward covered services, typically ranging from $1,000 to $2,000. For stand-alone dental coverage, premiums vary slightly depending on the age of the enrollee. For an adult age 40, the average premium in 2021 is $290 per year, and ranges from $97 per year to $780 per year.

How Current Proposals Would Add a Dental Benefit to Medicare

In the 116^th Congress, the House of Representatives passed the Elijah E. Cummings Lower Drug Costs Now Act (H.R.3), which among many provisions, provided for dental coverage under Part B of the Medicare program, starting in 2025 if enacted into law. Medicare would cover 80% of the cost of preventive services and basic treatments, and would phase up coverage for more major treatments, covering 10% of the cost in 2025, increasing 10 percentage points per year to 50% in 2029 and thereafter. The Congressional Budget Office estimated this benefit would cost almost $238 billion over 10 years (2020-209). The recently reintroduced version of H.R. 3 does not include coverage for a dental benefit.

Representative Doggett introduced the Medicare Dental, Vision, and Hearing Benefit Act (H.R. 4311) in July 2021 that would provide dental coverage under Medicare Part B. In contrast to H.R.3, the proposal, according to a press release, would require no coinsurance for preventive services, and impose a 20% coinsurance for more extensive benefits, which is similar to how the Part B benefit is structured for physician and other outpatient services, and is lower than the 50% coinsurance typically charged by Medicare Advantage plans.

Discussion

Since its enactment in 1965, Medicare has not covered routine dental care and half of Medicare beneficiaries (47%) do not have any dental coverage, as of 2019. Without dental coverage, many people on Medicare forego needed and routine dental care – an issue that disproportionately impacts communities of color – with significantly fewer visits to the dentist in the past year among Black and Hispanic beneficiaries (68% and 61%, respectively) compared to White beneficiaries (42%). Untreated oral health can exacerbate certain chronic diseases, delay diagnosis of serious health conditions, and result in costly emergency visits. Further, among beneficiaries who have the ability to pay for dental treatment, many experience high out-of-pocket costs, with 20% of people spending more than $1,000 out-of-pocket on dental care.

Medicare Advantage plans are the leading source of dental coverage for people with Medicare. While the scope of dental coverage varies across Medicare Advantage plans, there are some common features: virtually all Medicare Advantage enrollees with access to dental coverage as part of their plan have preventive benefits, and most have access to more extensive dental benefits, though cost sharing for more extensive services is typically 50% for in-network care, and subject to an annual cap on plan payments. More than three out of four (78%) enrollees with access to more extensive services are subject to annual caps – averaging about $1,300 in 2021.

In conducting this analysis, we found that plans do not use standard language when defining their benefits and include varying levels of detail, making it challenging for consumers or researchers to compare the scope of covered benefits across plans.

Given the continued interest in adding a dental benefit to Medicare, policymakers will need to weigh a variety factors in designing this benefit, including the scope of covered benefits, cost sharing for specific services, and how different levels of dental coverage may affect Medicare costs and premiums.

Methodology

This analysis uses data from multiple sources: Medicare Current Beneficiary Survey (MCBS), 2018 and 2019; Medicare Chronic Conditions Data Warehouse data from 20 percent of beneficiaries (20% Sample), 2019; and CMS Medicare Advantage Enrollment and Benefit files, 2019 and 2021. The analysis also uses data from the Center for Health Care Strategies’ (CHCS) Medicaid Adult Benefits data, updated September 2019.

To determine dental coverage in Figure 1, we combined data from multiple sources. The 20% Sample and Medicare Advantage Benefits files, 2019 were used to determine the number of Medicare Advantage enrollees with access to dental coverage. The 20% Sample, combined with data from CHCS 2019, was used to calculate the number of full dual eligible beneficiaries with some dental coverage based on whether they lived in a state that offered adult dental benefits through Medicaid. While we use CHCS data for dental coverage for adults, it is possible that not all duals are covered by adult dental benefits because the benefit may vary based on eligibility pathway. Private dental coverage was calculated using the share of MCBS 2019 responses to questions about whether a beneficiary has dental coverage, and then using that share to calculate a comparable number of people with private dental coverage using the 20% Sample for estimates of all Medicare beneficiaries. The populations are those with both Parts A and B in March of 2019, excluding the US territories. Had we included those with Part A-only, which is primarily people who have employer-based coverage or some public retirees, the number and share with private dental coverage would be higher.

This analysis of Medicare dental coverage differs from KFF’s analysis of dental coverage in 2016 in several ways, and therefore this data cannot be trended using our 2016 estimate. CMS identified a data collection and processing issue in the Medicare Current Beneficiary Survey 2016 data that resulted in lower estimates of private dental coverage than should have been reported based on actual survey responses. CMS resolved this issue in the 2017 MCBS. In our prior analysis, full dual eligible beneficiaries who lived in states with adult emergency-only dental coverage were considered to have dental coverage. However, in this analysis, they are not considered to have dental coverage because emergency-only coverage does not compare to most coverage provided under Medicare Advantage or private plans; Medicare also provides some emergency-only coverage. There were 16 states that we codified as not providing dental coverage to adults on Medicaid based on CHCS data: AL, TN, MD (no coverage); AK, AZ, FL, GA, ME, MS, NV, OK, TX, UT, WV (emergency-only coverage); and NH, DE (dental benefit was under development in 2019). We excluded from the total 4.4 million Medicare Advantage enrollees who are in employer-group health plans from this analysis (but not in the prior analysis) because information describing supplemental benefits, including dental coverage, are not available. Finally, in our prior analysis, we combined estimates from the 20% Sample and MCBS to determine the total number of Medicare beneficiaries in 2016, whereas the 2019 total population is derived from the 20% Sample.

The 2018 MCBS Cost Supplement file was also used to look at visits to the dentist, and out-of-pocket costs for dental services. MCBS Cost Supplement data from 2019 are not yet available for these variables.

The Medicare Advantage Enrollment and Benefit files for 2021 were used to look at dental coverage for beneficiaries enrolled in individual Medicare Advantage plans (e.g. excludes Special Needs Plans and employer-group health plans). This analysis includes enrollees in Puerto Rico and other territories. Plans with enrollment of 10 or fewer people were also excluded because we are unable to obtain accurate enrollment numbers.

To supplement the Medicare Advantage analysis, we examined the scope of dental coverage offered by ten Medicare Advantage plans in greater detail. We reviewed 2021 Medicare Advantage plans with the highest enrollment, and among these highest enrollment plans, we selected 10 geographically dispersed plans, taking into account variations across firms and a mix of HMO and PPO plans. As part of this illustrative analysis, we examined a variety of aspects of Medicare Advantage plans including premiums, annual caps, coinsurance/copayments, covered services, and networks, among others.

The Healthcare.gov 2021 QHP landscape data was used to look at plans available on the ACA Marketplace. This data only includes dental information from the federal marketplace; states that have their own marketplaces are not represented in this data. Child-only plans were excluded. Data used in this analysis was not enrollment-weighted.

1. U.S. Department of Health and Human Services. Oral Health in America: A Report of the Surgeon General. Rockville, MD: U.S. Department of Health and Human Services, National Institute of Dental and Craniofacial Research, National Institutes of Health, 2000; Schenkein HA, Loos BG. Inflammatory mechanisms linking periodontal diseases to cardiovascular diseases. J Clin Periodontol 2013;40 (Suppl. 14):S51–S69 https://onlinelibrary.wiley.com/doi/epdf/10.1111/jcpe.12060; Teeuw WJ, Gerdes VE, Loos BG. Effect of periodontal treatment on glycemic control of diabetic patients: a systematic review and meta-analysis. Diabetes Care 2010;33(2):421-7. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2809296/pdf/zdc421.pdf; Preshaw PM, Alba AL, Herrera D, et al. Periodontitis and diabetes: a two-way relationship. Diabetologia 2011;55(1):21-31. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3228943/#CR7; Allareddy V, Rampa S, Lee MK, et al. Hospital-based emergency department visits involving dental conditions. The Journal of the American Dental Association 2014;45(4):331–337. https://jada.ada.org/article/S0002-8177(14)60010-6/fulltext; Okunseri C, Okunseri E, Thorpe JM, Xiang Q, Szabo A. Patient characteristics and trends in nontraumatic dental condition visits to emergency departments in the United States. Clin Cosmet Investig Dent 2012;4:1-7. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3652363/ ↩︎

Key Takeaways

Understanding the health care needs and experiences of LGBT+ people in the United States is important for addressing barriers and facilitating access to care and coverage. We analyzed nationally representative data from a new KFF survey to compare the experiences of self-identified LGBT+ adults to their non-LGBT+ counterparts. Key findings include the following:

• The demographics of the LGBT+ community differ in some ways from that of their non-LGBT+ counterparts, differences that may have implications for health needs and access. Specifically, LGBT+ adults are younger, lower income, and less likely to be married.
• LGBT+ people more commonly report being in fair or poor health than non-LGBT+ people, despite being a younger population, and report higher rates of ongoing health conditions and disability or chronic disease.
• While LGBT+ people are as likely to have a usual source of care and regular provider, and use similar sites of care as their non-LGBT+ counterparts, they were more likely to report a range of negative provider experiences, including being blamed for health problems or having their concerns dismissed. At the same time, LGBT+ people were more likely to discuss certain health and social issues with their providers than non-LGBT+ people.
• LGBT+ people also more commonly report that they or a household family member has had problems paying medical bills in the past 12 months than non-LGBT+ people, and as for non-LGBT+ people, this is a challenge that sometimes impacts their ability to afford basic necessities.
• LGBT+ people’s utilization of health services compared to non-LGBT+ people varies considerably by service type. For example, LGBT+ women were less likely to report having had a recent mammogram or ever had gynecological exam than non-LGBT+ women but LGBT+ people were more likely to report having received other preventive screenings, including for sexual health.
• In some cases, LGBT+ people faced more challenging COVID-related circumstances than non-LGBT+ people, including a higher share of LGBT+ people seeking mental health care because of the pandemic.
• Smaller, but still substantial, shares of LGBT+ women report ever being pregnant compared to non-LGBT+ women, and majorities reported giving birth, though miscarriage was also a common experience.

Introduction

Understanding the health care needs and experiences of the more than 11 million LGBT people in the United States is important for addressing barriers and facilitating access to care and coverage. Studies have found that LGBT+ people experience certain health and access to care challenges at higher rates than their non-LGBT+ peers. Recognizing this, the National Institutes of Health (NIH) has identified sexual and gender minorities as a “health disparity population” to encourage and support research in this area. Health disparities among LGBT+ people can vary across the population and can intersect with factors beyond sexual orientation and gender identity to include race/ethnicity, class, nationality, and age, among other aspects of identity.

Despite some significant progress in researching these issues over the last decade, a recent study found that most population-based research still does not include measures of sexual orientation and gender identity, limiting the ability of policymakers, policy implementers, and researchers to assess national trends, disparities, and identify needed interventions. We sought to add to the knowledge base in this area by analyzing newly available, nationally representative data from the 2020 KFF Women’s Health Survey to compare the experiences of self-identified LGBT+ adults to their non-LGBT+ counterparts.

The survey included measures of sexual orientation and gender identity, as well as other demographic characteristics, and asked about a range of issues from general well-being to experiences engaging in the health system, HIV, reproductive health care, and the impact of COVID-19. The survey, conducted between November and December 17, 2020, included a nationally representative sample of 4,805 people ages 18-64 using an online probability-based panel, including 492 LGBT+¹  people and oversampled lesbian and bisexual women.²  (A breakdown of sample size by LGBT+ group is available in the appendix.) Data are representative of people who self-identified as ‘female’ or ‘male’ (regardless of sex assigned at birth) and two separate survey questionnaires were designed for these two gender groups. While we aimed to be as inclusive as possible, we were not able to obtain a large enough sample to support a separate questionnaire focused on non-binary or gender-fluid people. In addition, small sample size limits our ability to report representative estimates of experiences among transgender people.

Demographics and Family

The demographics of the LGBT+ community differ in some ways from that of their non-LGBT+ counterparts, differences that may have implications for health needs and access (Figure 1):

• LGBT+ people are younger than non-LGBT+ people. More than half (59%) are between the ages of 18-35 compared to 38% of non-LGBT+ people.
• LGBT+ people are also more likely to be low-income, with 34% having incomes below 200% of the federal poverty level (FPL)³  compared to 25% of non-LGBT+ people.
• While LGBT+ people report being employed at similar rates to non-LGBT+ people (65% v. 69%, respectively), they more commonly report that their employment is part-time (17% v. 12%, not shown in figure).
• Similar shares of LGBT+ and non-LGBT+ individuals are people of color, identify as female, and live in urban areas.

Family structure also differs for LGBT+ and non-LGBT+ people, differences which may have bearing on health and insurance coverage (Figure 2).

• LGBT+ people are less likely to be living with a partner than non-LGBT+ people (39% v. 56%), including being half as likely to be married (23% v. 48%). LGBT+ people are more likely, however, to be living with a partner to whom they are not married (15% v. 8%).
• One in five LGBT+ people (21%) are parents of children under age 18, a smaller share than non-LGBT+ adults (37%).

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Health Status

Data on the health status of the LGBT+ community reveals some of the disparities that exist for this group compared to their non-LGBT+ peers (Figure 3).

• Despite being a younger population that would typically be expected to be in better health, LGBT+ people more commonly report that their health is fair or poor than non-LGBT+ people (23% v. 14%), who are more likely to report good or excellent health (86% v. 77%).
• Among LGBT+ people, those with Medicaid coverage (compared to private insurance⁴ ), lower education, and lower incomes report fair/poor health status at higher rates than their LGBT+ peers in other groups.

Chronic Health Conditions and Disabilities

Many LGBT+ people are managing chronic conditions or living with disabilities that impact daily life, in some cases more so than among non-LGBT+ people (Table 1).

• Almost half (47%) of LGBT+ people report that they have an ongoing health condition that requires regular monitoring, medical care, or medication, a higher share than for non-LGBT+ people (40%).
  • This is particularly the case for LGBT+ people aged 45 and older, who are twice as likely to report having an ongoing health condition than younger LGBT+ people (77% v. 39%).
  • LGBT+ men and women report similar rates of an ongoing health conditions (52% and 44%, respectively. Similarly, rates of ongoing conditions do not vary between those with private insurance and those with Medicaid (48% and 51%, respectively).
• A larger share of LGBT+ people report having a disability or chronic disease that keeps them from participating fully in work, school, housework, or other activities than non-LGBT+ people (21% v. 14%).
  • LGBT+ people with Medicaid are more likely to report a disability or limiting chronic disease than LGBT+ people with private insurance (34% v.14%).

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Health Care Access

Sites of Care and Providers

LGBT+ people are as likely to have a usual source of care and report using similar sites of care as their non-LGBT+ counterparts, factors that are associated with increased use of preventive care and better health outcomes (Figure 4).

• Eighty-one percent (81%) of LGBT+ people report that they have a place they usually go when they are sick or need advice about their health, similar to non-LGBT+ people (82%) and rates increase among older LGBT+ people (96%).

• The type of location where care is received is also similar among LGBT+ and non-LGBT+ people (Figure 5). Most LGBT+ people with a usual source of care receive it at a doctor’s office (71%), though one in five (22%) obtain care at a clinic, such as a health center, urgent care center, or clinic inside a store or pharmacy. Smaller shares go to an emergency room (4%) or some other place (3%).
  • Among LGBT+ people who usually visit a health center or clinic, 39% go to a community health center or public health department and 38% go to a walk-in clinic such as an urgent care center or clinic inside a store or pharmacy.

• In addition to having a regular place to get care, most LGBT+ people (72%) have a regular doctor or health care provider they see when they are sick or need routine care, similar to non-LGBT+ people (78%) (Figure 6).
  • This share increases with age, from 65% among those 18-44 years old to 95% among those 45-65 years old but does not differ between those with private insurance and those with Medicaid.
  • Despite these high rates, 16% of LGBT+ people with an ongoing health condition that requires regular monitoring, medical care, or medication do not have a regular provider (data not shown in figure).

• About seven in ten (73%) LGBT+ people with a regular doctor report that they obtain their health care from a family or internal medicine doctor. Ten percent (10%) describe their primary provider as a physician assistant or nurse practitioner. Smaller shares see another type of provider (Figure 7).

Experiences Accessing Care

LGBT+ people report different, and in some case more challenging, experiences accessing care than their non-LGBT+ peers.

• LGBT+ people are more likely to report the following providers experiences compared to non-LGBT+ people (Figure 8). Had a provider…
  • Not believe they were telling the truth (16% v. 8%)
  • Suggest they were personally to blame for a health problem (13% v. 8%)
  • Assume something about them without asking (21% v. 11%)
  • Dismiss their concerns (29% v. 16%)
• Altogether, over one-third (36%) of LGBT+ people reported at least one of these negative experiences with a provider, compared to fewer than one in five (22%) non-LGBT+ people.
• Generally, these differences were especially apparent among LGBT+ women compared to non-LGBT+ women (data not shown).
• Those reporting mistreatment most commonly thought they were treated this way because of their age, followed by their gender, and then race/ethnicity. LGBT+ women are more likely to believe they had received poor treatment because of their gender compared to non-LGBT+ women (33% v. 18%).

While larger shares of LGBT+ than non-LGBT+ people reported negative provider experiences, LGBT+ people are also more likely to discuss certain health issues with their providers (Figure 9).

• Larger shares of LGBT+ people report having had a conversation with a provider or being asked about mental health than non-LGBT+ people (76% v. 64%), potentially reflecting higher mental health care needs in this group. Similar shares of LGBT+ people and non-LGBT+ people report having conversations or being asked about smoking (76% v. 70%) and alcohol or drug use (68% vs. 66%).
• LGBT+ people are more likely than non-LGBT+ people to have had a conversation about or been asked on a form about social vulnerability issues including housing security (26% v. 17%) and access to reliable transportation (22% v. 12%). (LGBT+ people are also more likely to discuss sexual health with their providers – see section on Sexual Health.)

Health Care Costs

LGBT+ people report having problems with health care costs at higher rates than non-LGBT+ people, including those related to medical bills and other insurance costs, potentially reflecting both lower incomes and higher health needs.

• A larger share of LGBT+ people report that they or a household family member has had problems paying medical bills in the past 12 months than non-LGBT+ people (30% v. 19%) (Figure 10).
  • This was more common among LGBT+ people ages 18-44 than ages 45-64 (33% v. 20%) and LGBT+ people in self-described poorer health (41% v. 27%), findings that may be correlated with income.
  • Thirty-five percent (35%) of LGBT+ women have had problems paying medical bills in the past two years, as have nearly one-quarter of LGBT+ men (24%).
  • Among the 30% of LGBT+ people who had trouble paying medical bills in the past 12 months, nearly six in ten (58%) say that it was due, at least in part, to the COVID-19 pandemic. (See the COVID-19 Experiences section for more details.)

Medical bills have consequences on LGBT+ people’s financial well-being, including their ability to afford basic necessities, similar to experiences among non-LGBT+ people (Figure 11).

• Among the 30% of LGBT+ people who report having trouble paying medical bills in the past 12 months, two-thirds (67%) say they used up all or most of their savings, and six in ten had to set up a payment plan with a doctor or hospital (60%) and/or have been contacted by a collection agency (59%).
• Half (52%) of LGBT+ people who had trouble paying medical bills in the past 12 months have had difficulty paying for basic necessities like food, heat, or housing, and four in ten (41%) borrowed money from family or friends.

Insurance Barriers

Even with health insurance, some LGBT+ people experience barriers or problems accessing or paying for health care (Figure 12).

• Similar to non-LGBT+ people, one in four (25%) LGBT+ people with health insurance report their plan would not cover a prescription medication, or charged high cost sharing for it, in the past 12 months; 10% say their plan stopped covering a medication they were taking; and 13% say that their plan would not cover a test or scan their doctor recommended.
• About one in four (26%) LGBT+ people with health insurance report that their plan did not cover a medical bill for themselves or a family member that they thought would be covered, or that it paid less for that service than expected. Twenty-four percent (24%) say the doctor they wanted to see was not covered by their health plan.

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Utilization of Health Services

In addition to asking about experiences with and barriers related to accessing health care, we explored LGBT+ people’s use of primary care services, including prescription drugs, wellness check-ups, and preventive cancer screenings. Utilization rates among LGBT+ and non-LGBT+ people vary considerably by service type

Prescription Drug Use

People take prescription medications for a range of reasons including to treat or manage chronic conditions and acute illnesses or to prevent pregnancy. Larger shares of LGBT+ people report taking at least one prescription medication on a regular basis than non-LGBT+ people (64% v. 51%) and as with non-LGBT+ people, prescription use increases with age (Figure 13).

General Check-ups

Regular provider visits give people an opportunity to address new, chronic, and emerging health issues, access preventive screenings, and discuss a broad range of issues with a clinician.

• While nine in ten (91%) LGBT+ people have seen a doctor or health care provider in the past two years, just three-quarters (68%) of this group has had a general check-up or well-woman visit⁵  in the past two years (Table 2). These shares are similar to non-LGBT+ people (90% and 71%, respectively).

Cancer Screenings

Use of preventive cancer screenings can lead to early identification of conditions when they are more responsive to medical interventions and potentially avert serious complications (Figure 14).

• Substantially smaller shares of LGBT+ women aged 40-64 report having had a mammogram in the past two years than non-LGBT+ women (35% v. 64%).
• LGBT+ people in the targeted screening groups report having Pap smears and colon cancer screenings in the past two years at similar rates as non-LGBT+ people (54% v. 60% and 52% v. 47%, respectively).

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COVID-19 Pandemic Experiences

The COVID-19 pandemic has impacted people’s lives across the country. In some cases, LGBT+ people have had similar COVID-related experiences to non-LGBT+ people, but in other situations, they faced more challenging circumstances.

• LGBT+ people and non-LGBT+ people reported having used telehealth at similarly low rates prior to the pandemic (16% v 12%, respectively). While experience with telehealth increased for both groups during the pandemic, it was higher among LGBT people (49% v. 34%, respectively) (Figure 15).

• LGBT+ people and non-LGBT+ people reported difficulty getting appointments (29% v. 25%) and skipping or delaying care at similar rates because of the coronavirus pandemic, including with respect to accessing preventive services (36% v. 31%), a recommended test or treatment (24% v. 18%), and birth control (6% v. 4%).
• While LGBT+ and non-LGBT+ people report skipping or delaying care at similar rates by a range of measures, LGBT+ people are more likely to report that their health condition worsened as a result of skipping care than non-LGBT+ people (22% v. 13%) (Figure 16).
• LGBT+ people also report similar rates of veering from prescription drug regimens (e.g., not filling prescriptions, cutting pills in half or skipping doses) as non-LGBT+ people (11% and 9%, respectively).

• In addition, LGBT+ people were more likely to report seeking mental health care because of the pandemic compared to non-LGBT+ people (24% v.12%), potentially reflecting separate findings that LGBT people report the pandemic negatively impacted their mental health more widely and severely than non-LGBT people.
• LGBT+ people are also more likely than non-LGBT+ people to report having to quit a job for a reason related to COVID-19 (15% v. 7%), taking time off work because of personally becoming ill with COVID-19 or quarantining (19% v. 11%), or taking time off work to care for a family member who was sick with COVID-19 or quarantining (10% v. 5%) (Figure 17).

• Among the 30% of LGBT+ people who report having problems paying medical bills in the past 12 months (see section on health care costs), 58% say that it was at least in part because of the COVID-19 pandemic, with more than a quarter (27%) saying it was due only to the impact of the pandemic alone (Figure 18).

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Sexual and Reproductive Health

STI and HIV Testing

• LGBT+ people report higher rates of testing for sexually transmitted infections (STIs) and HIV than their non-LGBT+ peers, services that are recommended for early detection, treatment, and preventing transmission. This could reflect higher rates of STIs in the community as well as greater awareness of testing (Table 3).
• Thirty-five percent (38%) of LGBT+ people ages 18-64 have been tested for an STI (other than HIV) such as chlamydia or herpes in the past two years, higher than the share of non-LGBT+ people (17%). Among LGTB+ people, rates are higher among those with Medicaid (54%) than private insurance (33%). STI testing rates among bisexual women (46%) are higher than the average (data not shown in figure).
• Thirty-seven percent (37%) of LGBT+ people ages 18-64 have been tested for HIV in the past two years, higher than the share of non-LGBT+ people (16%). Approximately six in ten LGBT+ people with Medicaid (60%) report being tested for HIV in past two years.

The survey also asked how people knew they had been tested for STIs and HIV (Figure 19).

• Among LGBT+ people who report that they have been tested for HIV or another STI in the past two years, about half say they asked to be tested. LGBT+ people are more likely to request HIV testing than non-LGBT+ people (53% v. 32%).
• Some LGBT+ people say they had been tested for HIV (16%) and STIs (16%) because they believed it was a routine part of their exam. It is possible that some in this group who believe they were tested but it wasn’t discussed may not have actually received the test. Larger shares of non-LGBT+ believe they had been tested for HIV but that it wasn’t discussed than non-LGBT+ people (24%).

Sexual Health Counseling

LGBT+ people more commonly report talking with a provider about a range of sexual health and relationship issues than non-LGBT+ people, counseling that, for most insured people, is required to be covered without cost-sharing (Figure 20).

• Among the 90% of people who have visited a provider in the past two years, larger shares of LGBT+ people report recently talking with a provider about their sexual history or relationships than non-LGBT+ people (64% v. 44%, respectively).
• LGBT+ people also more commonly report talking with providers about HIV (36% v. 22%) and other STIs (33% v. 19%) than non-LGBT+ people.
• While conversations about PrEP, a medication that prevents HIV, are relatively uncommon among both groups, they are more than twice as common among LGBT+ people than non-LGBT+ people (18% v. 8%).
• We note some key differences by gender:
  • Among LGBT+ women who have visited a provider in the past two years, bisexual women report the highest rates of conversations about sexual history (74%), HIV (30%) and other STIs (36%) with providers. Rates are generally lower among lesbian and non-LGBT+ women. LGBT+ women and non-LGBT+ women have similarly low rates of conversations about PrEP with their providers (11% and 9%, respectively).
  • Compared to non-LGBT+ men, LGBT+ men are more likely to talk to their providers about their sexual history (56% v. 34%), HIV (43% v. 22%), and other STIs (32% v. 17%). In particular, LGBT+ men are more than 3 times as likely to talk with their providers about PrEP than non-LGBT+ men (25% v. 8%).
  • Approximately two-thirds of LGBT+ (67%) and non-LGBT+ (68%) women report that they have discussed contraception with a provider in the past two years.
  

• Approximately four in ten (39%) LGBT+ women and 44% of non-LGBT+ women rate their most recent contraceptive care provider as “excellent” on all four items of person-centered contraceptive counseling.

Reproductive Health Experiences

Gynecological exams typically include cervical and breast cancer screening, education, and counseling and in some cases, LGBT+ women report lower rates of accessing this care (Figure 21). We did not assess service utilization based on sex assigned at birth/biological need for services. As such, transgender men, and others who could benefit from reproductive care, may have been excluded from these findings drawn from a base of respondents who identified as female.

• Smaller shares of lesbian women aged 18-64 report having had a gynecological visit in the past three years compared to non-LGBT+ women (59% v. 73%).
• One in five (20%) lesbian women and 12% of bisexual women say that they have never seen a doctor or nurse for a gynecological exam, which is significantly higher than non-LGBT+ women (6%).

Contraception

People use contraception for a range of reasons and sometimes for more than one reason at a time (Figure 22).

• In the past 12 months, over half of LGBT+ women ages 18-49 (56%) and half of non-LGBT+ women (51%) report using contraception to prevent pregnancy, manage a medical condition, prevent a sexually transmitted infection (STI), or some other reason.
  • Contraception use among LGBT+ women is driven by bisexual women, nearly two-thirds (63%) of whom have used it in the past 12 months (data not shown in figure).
• One in seven LGBT+ women ages 18-49 (14%) use contraception to manage a medical condition, which is nearly twice the share of non-LGBT+ women (8%).

• The majority of LGBT+ (87%) and non-LGBT+ (87%) women ages 18-64 report using contraception in their lifetime. Among LGBT+ women, this share is driven by bisexual women (Table 4).
  • Male condoms and oral contraceptives are the most commonly used methods among both LGBT+ women and non-LGBT+ women. LGBT+ women, driven by bisexual women, are more likely to report using contraceptive implants (12%) and emergency contraception (32%) than non-LGBT+ women.
  • LGBT+ women reported using an average of 3.6 different contraceptive methods throughout their lifetime, similar to the average of 3.4 methods among non-LGBT+ women.
• One in four LGBT+ women (25%), primarily bisexual women, said if they could use any type of birth control method available, they would want to use a different method than they’re currently using, compared to one in six (17%) non-LGBT+ women.

Pregnancy Experiences

Over four in ten (41%) LGBT+ women ages 18-64, including 45% of bisexual women and 19% of lesbian women, report ever being pregnant in their lifetime compared to seven in ten (71%) non-LGBT+ women (Table 5).

• Of those who report ever having a pregnancy, 83% of LGBT+ women and 92% of non-LGBT+ women report giving birth. Nearly half (46%) of LGBT+ women and 37% of non-LGBT+ women who have been pregnant report having a miscarriage.

• Over half (56%) of bisexual women and 21% of lesbian women report a time they were concerned they were pregnant when they did not want to be, compared to 42% of non-LGB women (Figure 23).
  • The top reason for both groups of women was they did not use birth control, followed by missing a pill or using birth control incorrectly, and a birth control method failure, such as a condom breaking.
  • Larger shares of bisexual women (25%) report not being confident the method they were using worked than non-LGB women (16%).

Abortion

Most women say that they know someone who has had an abortion. This is higher among LGBT+ women (68%) than non-LGBT+ women (59%). Nearly two-thirds of LGBT+ women (64%) say they have heard of a medication abortion (a pregnancy termination protocol used up to the first 10 weeks of pregnancy that involves taking two different drugs, mifepristone and misoprostol), higher than the share of non-LGBT+ women (55%) (Figure 24).

Conclusion

This brief aims to add to the evolving body of work on the health of LGBT+ communities. We find that while in many cases LGBT+ people have similar health and health care experiences to non-LGBT+ people, there are some notable differences, particularly with respect to some poorer health outcomes and negative provider experiences, as well as lower utilization of care in some cases and a higher burden of medical bills. LGBT+ people have also experienced certain COVID-era challenges at higher rates.

While data collection on LGBT+ people is improving, particularly at the federal level, it is still not standard, and as such, knowledge gaps remain, including with respect to health status, health needs, and health care access. Lack of research in this area limits the ability of those in both policy and health care sectors to address health needs and disparities within the population. Given LGBT+ people’s common experiences with stigma, discrimination, and violence in a range of environments (e.g., home, work, school, health care, etc.) and the evolving legal protections based on sexual orientation and gender identity, collecting this data is especially important in furthering goals of equity and access.

1. LGBT+ is defined to include people who identified as lesbian, gay, bisexual, transgender, or “something else” (other than straight). ↩︎
2. See the Methodology section for more details and the toplines for full question wording. ↩︎
3. The FPL for a family of four in 2020 was $26,200. ↩︎
4. Private health insurance includes insurance provided through an employer and insurance purchased individually. ↩︎
5. Survey respondents who identified as female were asked if they had had either a general check-up or a well-woman visit. All others were asked if they had had a general check-up. ↩︎

The coronavirus pandemic’s disproportionate impact on seniors and people with disabilities and chronic illnesses has brought heightened focus on the unmet need for home and community-based services (HCBS). Medicaid serves as the primary source of coverage for HCBS, which help these populations to live independently outside institutions by assisting with daily needs. In addition to determining whether to retain Medicaid HCBS policy changes adopted during the pandemic, states are currently developing plans to access an increased federal matching rate (“FMAP”) for Medicaid HCBS spending established in the American Rescue Plan Act (ARPA) of 2021. In the future, states may also be able to access increased HCBS funds proposed in the Biden Administration’s American Jobs Plan and the Better Care Better Jobs Act recently introduced in Congress.

To provide context for state considerations of policy options for the post-pandemic period and the potential use of new federal funds, this brief highlights examples of Medicaid HCBS policy changes authorized through Section 1115 demonstration waivers in seven states (Arizona, Delaware, New Jersey, New York, Rhode Island, Vermont, and Washington). Where available, we discuss waiver evaluation findings and reports that assess the impact of these policy changes. Key waiver provisions seeking to expand HCBS include the following (and are summarized in a state-by-state table in the Appendix):

• Streamline processes for determining eligibility and providing services.
• Expand financial eligibility rules to help certain enrollees afford to live in the community.
• Serve additional populations by expanding financial and/or functional eligibility rules.
• Offer new services through alternative benefit packages.

States may be unlikely to pursue new 1115 waivers to use the ARPA HCBS funds because these funds are available for states to claim for one year only (though states have until March 2024 to spend the enhanced funds). However, these examples from 1115 waivers identify policy areas that states may consider targeting through existing state plan or HCBS waiver authorities, particularly where state evaluations and experiences have found that policy changes seeking to expand HCBS access have achieved their goals.

Streamlining eligibility and enrollment processes

To provide faster access to HCBS, states have used 1115 authority to streamline processes for determining eligibility and providing services, including by authorizing benefits during a presumptive eligibility period and accepting self-attestation as verification for financial eligibility.

Authorizing benefits during a presumptive eligibility period. Presumptive eligibility is a longstanding option that allows states to authorize certain qualified entities to enroll individuals who appear likely eligible for coverage while the state processes the full application and makes a final eligibility determination. Presumptive eligibility can facilitate access to coverage and services when individuals in need of critical services also may need extra time to collect documents needed to complete a full eligibility determination. While states may allow hospitals to determine presumptive eligibility for Medicaid pathways based on old age or disability without an 1115 waiver, several states have used 1115 authority to provide presumptive eligibility (determined by non-hospital entities) for more limited populations and/or benefits to provide faster access to HCBS. For example:

• Washington uses 1115 authority to provide presumptive eligibility for both its Tailored Support for Older Adults (TSOA) and Medicaid Alternative Care (MAC) programs, which provide supportive services to older adults and their caregivers (see Appendix for program details). An interim evaluation Quarterly progress reports from 2020 indicate high proficiency for appropriate determinations of nursing facility level of care, performed primarily by local Area Agencies on Aging, for those enrolled presumptively and low percentages of enrollees determined ineligible after the presumptive eligibility period. In a recent pending waiver amendment requesting to further extend presumptive eligibility for LTSS, Washington noted that the high accuracy rate of presumptive eligibility determinations for TSOA “exemplifies the minimal risk to the state and [] federal partners.”
• Rhode Island’s waiver also authorizes HCBS benefits to new long-term care (LTC) applicants during a presumptive eligibility period while final financial eligibility determinations are pending.

Accepting self-attestation as verification for financial eligibility. States may simplify the Medicaid application process by allowing applicants to self-attest to certain financial eligibility criteria. During the COVID-19 public health emergency (PHE), some states are using Medicaid emergency authorities to allow self-attestation of eligibility requirements for applicants to Medicaid pathways based on old age or disability. States may also use 1115 authority to allow more limited populations to self-attest to financial eligibility requirements. For example,

• New Jersey’s 1115 waiver eliminates state review and instead accepts self-attestation of no asset transfers during the five-year look-back period for applicants below 100% FPL seeking LTC and HCBS. The look-back period delays the date of Medicaid eligibility for applicants who transferred assets for less than fair market value, which instead could have been used to meet long-term care needs. New Jersey conducted electronic asset verification of randomly selected applications in 2015 and 2016 and found a 0% error rate on these sampled self-attestations, concluding that “the often burdensome five year lookback process can be safely eliminated for many low-income applicants.”

Expanding financial eligibility rules

To help enrollees maintain community residence, states have used 1115 authority to modify financial eligibility rules for limited populations (though states may more generally expand financial eligibility without waiver authority). These expanded eligibility rules enable enrollees to more easily afford to live in the community rather than in nursing facilities and include:

• Establishing an income disregard that accounts for average rent (in New York). New York’s 1115 waiver applies a special income disregard that accounts for average rent when determining financial eligibility for individuals moving from institutional to community settings. An evaluation of New York’s waiver has found positive impacts among individuals transitioning out of institutional settings, including that high percentages of enrollees remained in the community.
• Increasing the asset limit for certain HCBS beneficiaries (in Vermont). Vermont uses 1115 authority to increase the asset limit for certain high-need beneficiaries receiving HCBS. Evaluation results suggest positive impacts for this population, including an increase in the percentage of participants living in home and community settings versus in nursing facilities.
• Increasing the personal needs allowance for certain HCBS beneficiaries (in Rhode Island). For enrollees transitioning from nursing facilities to the community, Rhode Island’s 1115 waiver increases the personal needs allowance, which is the amount of funds not considered available to contribute to the cost of LTC services.

Serving new populations by expanding eligibility rules

Several states use 1115 authority to expand financial and/or functional eligibility rules to serve additional populations, such as:

• Elderly and near-elderly adults (in Washington). Washington’s TSOA program creates a new eligibility pathway and benefit package for otherwise ineligible adults older than 55 who require nursing facility level of care. By serving these adults with and without unpaid caregivers, TSOA aims to delay or avoid the need for more intensive LTSS. An interim evaluation of the program suggests that TSOA has met this goal: while 24-35% of TSOA participants enrolled in regular Medicaid within 6 months of TSOA enrollment, only a very small percentage used traditional LTSS. Both TSOA caregivers and recipients expressed high satisfaction with the program, with 86-90% of recipients indicating that the TSOA program would help keep them from moving to a nursing home or adult family home.
• Young adults with disabilities (in Rhode Island). Rhode Island’s 1115 waiver covers young adults age 19 to 21 who age out of the Katie Beckett group (which provides coverage to children with significant disabilities without regard to family income) and are in need of services for behavioral health or medical/developmental diagnoses. This new pathway aims to enable children with disabilities to maintain continuity of care and remain in the community as they age into young adulthood. Issues related to continuity of care for young adults with disabilities are widespread beyond Rhode Island: for example, a recent New York Times article details how in New York, the change from “medically fragile child” to “medically fragile adult” includes lower pay rates for nurses that could result in young adults with disabilities losing care and being forced to move into nursing homes.
• Children with disabilities (in Delaware). Delaware’s 1115 waiver creates a new eligibility pathway for children with disabilities who do not meet institutional level of care criteria for the Katie Beckett pathway, but are at risk of institutionalization absent the provision of services. By providing benefits to serve these children with disabilities in the community, this new pathway could help delay or avoid the use of more costly LTSS. States may use Section 1915 (i) state plan authority to serve enrollees with functional needs that are less than an institutional level of care; however, Delaware uses 1115 authority in order to limit this population to children with incomes at or below 250% of Supplemental Security Income (SSI) ($1,985 per month in 2021).

Offering new services

While states may add services to existing benefit packages without 1115 authority, they instead may use 1115 waivers to design alternative benefit packages. For example, the MAC program created by Washington’s 1115 waiver provides an alternative benefit package to support unpaid caregivers for older adults who are otherwise Medicaid eligible. This provision supports these enrollees and their caregivers by providing additional HCBS benefits not available in the standard Medicaid benefit package (though not the full Medicaid benefit package in other respects), which in turn may help the clients they care for remain in the community. An interim evaluation report shows that MAC enrollment has been lower than anticipated (with just 251 caregiver/care-receiver pairs enrolled in MAC as of October 2020, compared to initial projections of 4,673 MAC enrollees in that month) and suggests that further outreach may be necessary to reach eligible populations. Of those who did enroll, however, both caregivers and care recipients reported high satisfaction with the MAC services provided. The report also suggests that MAC participation has reduced the occurrence of adverse health outcomes and helped enrollees delay or avoid the use of more intensive traditional Medicaid LTSS.

Looking Ahead

As the primary source of coverage for HCBS, Medicaid plays a significant role in helping states meet community integration obligations under the Americans with Disabilities Act and the Supreme Court’s Olmstead decision. While the unmet need for HCBS for seniors and people with disabilities pre-dates the COVID-19 pandemic, during the PHE states have taken a number of emergency Medicaid LTSS actions, such as HCBS benefit expansions and provider payment rate increases for HCBS. In guidance on considerations for the end of the PHE, CMS specifically encourages states to identify temporary authorities that increase access to HCBS and to consider making these changes permanent. Further, the American Rescue Plan Act provided a time-limited increase in the Medicaid FMAP for HCBS spending to fund activities beyond what is currently available in states’ Medicaid programs. States must develop plans to use these funds for expanded HCBS activities such as streamlining eligibility/enrollment processes, increasing covered services, and supporting family caregivers. The existing HCBS policy changes in Section 1115 waivers summarized in this brief may provide useful examples of areas that states could target, particularly where state evaluations and experiences have found that policies seeking to expand HCBS access have achieved their goals.

Appendix