More than 6 million people use paid long-term services and supports (LTSS) delivered in home and community-based settings and more than 2 million people use LTSS delivered in institutional settings, according to CBO estimates. LTSS encompass the broad range of paid and unpaid medical and personal care services that assist with activities of daily living (such as eating, bathing, and dressing) and instrumental activities of daily living (such as preparing meals, managing medication, and housekeeping). The 8 million people using LTSS only includes people requiring ongoing or maintenance therapy. Many others use similar services on a shorter-term or intermittent basis, such as care provided through the Medicare home health and skilled nursing facility benefits. Direct care workers play a pivotal role in providing these services. They perform demanding, high-stress work for low wages and often no benefits.

This analysis uses the 2022 American Community Survey to provide an overview of demographic characteristics, wages, and health insurance coverage of direct care workers, which include home health aides, personal care aides, nursing assistants, licensed practical nurses (LPNs), and registered nurses (RNs). It focuses in particular on direct care workers in nursing facilities, residential care facilities, and home health as well as those that provide services or work in settings that provide nonresidential services for older adults and younger adults with disabilities (see Methods). In doing so, we examine the direct care workforce broadly and differences across job classifications and settings of work. Key takeaways include:

• There are nearly 3 million direct care workers who are predominantly female (87%) and low-wage (65%); over one-quarter are Black (28%) and over four in ten are 50 years old or more (41%) (Figure 1).
• Direct care workers work across a variety of settings and include personal care aides, nursing assistants, home health aides, LPNs, and RNs (Figure 2).
• Home health aides, personal care aides, and nursing assistants (collectively, “aides”) and LPNs are more likely to be under 35, Black or Hispanic, low-wage workers, uninsured, or covered by Medicaid when compared with RNs (Figure 3).
• Nursing facilities and residential care facilities have higher shares of nurses (LPNs and RNs) when compared to home health settings and services for older adults and younger adults with disabilities (collectively, “home and community-based settings”) (Figure 4).
• Direct care workers in home and community-based settings are more likely to be noncitizens and work part-time when compared to those in nursing facilities and other residential care settings (Figure 5).

There have been longstanding challenges finding enough workers to provide LTSS for people who need such services, and the COVID-19 pandemic exacerbated those issues considerably. In a 50-state survey of officials administering Medicaid HCBS programs, nearly all responding states reported they were experiencing shortages of direct support professionals, personal care attendants, and/or home health aides. The adequacy of staffing in nursing facilities has also been a longstanding issue.

In response to workforce issues, the federal and state governments have taken action to support direct care workers. Section 9817 of the American Rescue Plan Act (ARPA) provided states with an additional 10 percentage points of federal funding for their Medicaid HCBS expenditures that occurred between April 1, 2021, and March 31, 2022. States were required to reinvest the additional federal funding in Medicaid HCBS, resulting in an estimated $37 billion of new HCBS funding. As of December 31, 2023, the number one use of the ARPA funds—accounting for more than $26 billion of the planned $37 billion in new funding—was for workforce recruitment and retention. The second largest use (an additional $4 billion) was for workforce training. Other uses of funding include quality improvement activities and reducing or eliminating HCBS waiting lists.

The Biden-Harris Administration finalized two rules aimed at addressing shortages of direct care workers: (1) the first-ever requirements for nurse staffing levels in nursing facilities, and (2) a rule governing access to Medicaid services with several provisions to strengthen the HCBS workforce, including requiring states to spend least 80% of total Medicaid payments for certain HCBS on compensation for direct care workers, a provision that will not take effect until 2029. Many states have adopted payment rate increases for HCBS providers and nursing facilities with the goal of boosting staffing levels, as reported to KFF in a 2023 survey. Vice President Harris also recently put forth a proposal that would establish a new Medicare home care benefit, among other changes. Although the proposal does not yet have specifics, it proposes improvements for care workers via access to better wages.

In 2022, there were nearly 3 million direct care workers who provided LTSS to people ages 65 and older and people under 65 with disabilities. These workers were predominantly female (87%) and low-wage (65%); over one-quarter were Black (28%) and over four in ten were age 50+ (41%) (Figure 1). Nearly one in three were part-time workers, and about one in ten were noncitizens, uninsured, and/or lived in rural areas. These demographic characteristics are all somewhat more common among direct care workers than among other working adults (Appendix Table 1).

Direct care workers provide care across various settings: 58% worked in home health settings or provided nonresidential services for seniors and people with disabilities (collectively, “home and community-based services” or “HCBS”), 29% worked in nursing facilities, and the remaining 13% worked in residential care facilities (Figure 2). Nursing facilities are the most medically-oriented institutional settings, providing both short-term skilled nursing and long-term maintenance care services. Residential care facilities include a variety of settings – some institutional and some community-based – and are, as a group, less institutionalized than nursing facilities. HCBS are provided in people’s homes and other community-based settings (Box 1).

Over three-quarters (77%) of direct care workers were personal care aides, nursing assistants, or home health aides (collectively “aides”) and the remaining quarter (23%) were registered nurses (RNs) or licensed practical nurses (LPNs) (Figure 2). Direct care worker responsibilities vary, with some workers primarily providing personal care services, some providing primarily medical care, and some providing a mix of both. Aides tend to provide mostly personal care services whereas RNs provide mostly medical care, and LPNs provide both types of services (Box 1). The educational requirements for LPNs and, especially, RNs, are greater than the requirements for aides on account of the more medical nature of their duties.

Compared with registered nurses, higher percentages of aides and LPNs are younger, Black or Hispanic, low wage, and covered by Medicaid or uninsured (Figure 3). Nearly one in three aides (31%) and over one in four LPNs (27%) are under 35 years old, compared with just one in five RNs (20%). Over half of all aides (52%) and nearly four in ten LPNs (39%) are Black or Hispanic, compared to just 25% of RNs. RNs are the highest paid direct care workers and aides are the lowest-paid direct care workers, with over three-quarters (76%) of aides reporting wages under $35,000. In comparison, just one-fifth (21%) of RNs report wages of less than $35,000. LPNs’ wages are higher than those of aides but lower than those of RNs. The differences in wages are likely attributable, at least in part, to the fact that the educational requirements are most rigorous for RNs and least rigorous for aides. Aides are also more likely than nurses to work part-time, likely another contributing factor to the wage discrepancies (Appendix Table 1). Aides are twice as likely to be uninsured compared with RNs (12% vs 6%) and four times as likely to be covered by Medicaid (35% vs 9%). LPNs are nearly twice as likely as RNs to be uninsured (11% vs 6%) or be covered by Medicaid (16% vs 9%).

Nursing facilities and residential care facilities have higher shares of nurses compared to home and community-based settings (Figure 4). The percentage of direct care workers who are RNs or LPNs is 43% in nursing facilities, 21% in residential care facilities, and 14% in home and community-based settings. The Biden-Harris Administration released a rule that creates new requirements for nurse staffing levels in nursing facilities, including minimum levels for nurse aides and registered nurses. This rule was highly anticipated as it would create the first-ever federal minimum staffing levels, though even prior to the staffing rule, many states had their own minimum staffing levels. In contrast, a new rule on access to Medicaid services includes several requirements regarding the adequacy of states’ payments for direct care workers in home and community-based settings, but does not establish any minimum staffing levels for such settings.

Direct care workers that work in home and community-based settings are significantly more likely to be noncitizens, work part-time, and have lower wages when compared to those in nursing facilities and other residential care settings (Figure 5 and Appendix Table 1). Among direct care workers in home and community-based settings, 12% are noncitizens compared with 8% in residential care facilities and 6% in nursing facilities. Noncitizens include those who are lawfully present as well as those who are undocumented, though the majority of noncitizen immigrants are lawfully present. Part-time work is also more common among workers in home and community-based settings, with 40% of workers working part-time compared with 22% of nursing facility workers and 24% of residential care facility workers. Direct care workers overall are more likely to be part-time workers than all adult workers (32% vs 16%), which may be part of the reason they are more likely to have wages under $35,000 (64% vs. 38%) (Appendix Table 1). Low wages among direct care workers broadly are a key driver in the high turnover in the workforce, which has spurred action among federal and state policymakers. The Biden-Harris administration finalized a rule aimed at ensuring access to Medicaid services, which included a provision that requires states to spend least 80% of total payments for certain HCBS on compensation for direct care workers. Most states have also increased payments to direct care workers to increase the supply of HCBS workers, though some of those states have indicated that some of those increases are temporary.

Both 2024 presidential candidates have addressed direct care workforce shortages in their party platforms, but questions remain about how the shortages would be addressed. The Republican platform proposals address disincentives that contribute to workforce shortages, but it is unclear what policies a Republican Administration would put forth to achieve those goals. On October 8, 2024, Vice President Harris put forth a proposal that would establish a new Medicare home care benefit, among other changes. Although the proposal is not fully specified, it proposes to lift up care workers by providing access to better wages. If enacted, the Harris proposal would be the first major expansion of Medicare since the Medicare Modernization Act of 2003 that added a prescription drug benefit to the program. Many policy details would have to be worked out as the proposal wound its way through Congress, including questions about eligibility, benefit design, financing, and workforce shortages.

On the heels of three straight years of record high enrollment, the 12^th annual Affordable Care Act (ACA) Marketplace open enrollment season will be another opportunity for more people to gain coverage. It is also an opportunity for people already enrolled to make changes to their health plan. Here are ten things to know about the 2025 open enrollment period.

1. Unsubsidized premiums are increasing modestly, but most enrollees won’t pay that. Premiums for benchmark silver plans, which are the basis for subsidy calculations, are increasing by 4% on average, while lowest-cost bronze premiums are up by 5%. Premium increases are steepest in Vermont, Alaska, and North Dakota, where unsubsidized monthly costs are growing by 10% or more. Meanwhile, low-cost plan premiums are falling in 9 states, including by double digits in Louisiana. (State-level data are here.) A Peterson-KFF Health System Tracker analysis found that rising hospital costs and increased use of GLP-1 drugs are among factors contributing to higher premiums. On average nationally, a 40-year-old’s benchmark silver premium would be $497 per month without a subsidy. However, the vast majority (92%) of Marketplace shoppers receive a subsidy, and with enhanced subsidies most of them can find a plan with a premium of less than $10 per month. Because these subsidies cap monthly payments at a share of an enrollee’s income, the vast majority of Marketplace enrollees will not have to pay a premium increase.
2. This could be the last year of enhanced subsidies. Enhanced subsidies under the Inflation Reduction Act (IRA) are set to expire at the end of 2025. Initially introduced in the American Rescue Plan Act, these subsidies increased premium support for existing enrollees and expanded eligibility to those earning above 400% of the poverty level. These subsidies, which have driven the record-high enrollment in Marketplaces, will remain in place for the duration of 2025, but would require an act of Congress to extend them in 2026 or beyond. If these enhanced subsidies expire, the original ACA subsidies will remain in place but premium payments (net of subsidies) are expected to double or more in a number of states in 2026.
3. Marketplace shoppers will have more choice of insurers. On average, across states, 9.6 insurers are participating on the ACA Marketplaces, which is higher than in any prior year (state data are here). In 2025, 97% of Healthcare.gov enrollees will have 3 or more ACA insurers, up from 78% of enrollees in 2021. Several insurers are entering into new states in 2025. For example, UnitedHealth Group is expanding into 4 new states and 119 additional counties in 13 of the 26 states where they already participate. Centene (Ambetter) also announced it is expanding into 60 new counties across 10 states. With ACA Marketplace signups reaching record highs and strong financial performance for participating insurers, the ACA Marketplaces have become a more appealing market than they had been in 2018, when insurer participation was at a low point.
4. Open enrollment is from November 1, 2024 to January 15, 2025 in most states. In accordance with new federal rules encouraging states to standardize their open enrollment periods, the 2025 open enrollment period will now begin on November 1, 2024 in all states except Idaho, where open enrollment began October 15. Open enrollment will end on January 15, 2025 in most states, except Idaho (December 16, 2024), Massachusetts (January 23), California, New Jersey, New York, Rhode Island, and DC (all January 31).
5. New states are transitioning to a State Based Marketplace. Georgia will be transitioning to a State Based Marketplace for the 2025 plan year. This will bring the total number of state-based marketplaces to 20. Illinois is scheduled to transition into a state-based marketplace for the 2026 plan year and will stop using the federal platform in November 2025. For now, Illinois residents should continue to use Healthcare.gov.
6. The federal government is taking new actions to combat fraud. The federal government has received numerous complaints from consumers who have been the victims of fraud, where insurance brokers have signed them or switched their plans without their consent. The federal government has taken enforcement actions to combat this fraud (including suspending certain brokers) and has applied Healthcare.gov standards on web brokers and direct enrollment entities to State-Based Marketplaces.
7. Changes to short-term plans are taking effect. The Biden Administration is reversing the Trump Administration’s expansion of short-term health insurance plans that are not ACA-compliant and can discriminate against people with pre-existing conditions. The new rules require that short-term plans be limited to 4 months total, and must now come with a consumer notice in all online and written marketing, enrollment application and other materials stating that the coverage “is NOT comprehensive health coverage.” Short-term plans are not sold on the ACA Marketplaces, but some consumers have reported feeling misled into believing they were buying comprehensive plans. A similar disclaimer notice must be included in materials for fixed indemnity policies sold to consumers off Marketplace. These are plans that pay a specific amount if someone is sick or hospitalized. Like short-term plans, fixed indemnity plans do not have to meet most of the ACA’s consumer protections. Written and online information must now say that this fixed indemnity coverage “is NOT health insurance.” While a recent lawsuit challenges the new notice for fixed indemnity plans, as of now it is still required.
8. Special enrollment opportunities are changing. HealthCare.gov enrollees with incomes up to 150% of poverty will continue to have a year-round special enrollment opportunity, though this is optional for state-based marketplaces. However, the “Medicaid Unwinding” special enrollment period is ending November 30, 2024. In addition, starting in 2025, all consumers who choose an ACA Marketplace plan during a special enrollment period (whether a federal or state-based marketplace) will have their coverage begin on the first day of the month following their plan selection. (In the past, in some state-based Marketplaces, if a consumer chose a health plan during a special enrollment period after the 15th of the month, coverage began on the first day of the second month.)
9. Deferred Action for Childhood Arrivals (DACA) recipients will be allowed to sign up for subsidized coverage through the Marketplace in 2025. A new Biden-Harris administration rule finalized earlier this year expands eligibility for DACA recipients by redefining “lawfully present.” Starting November 1, 2024, DACA recipients will be allowed to sign up for coverage through the Marketplace or through the Basic Health Program. They will have access to premium tax credits and cost sharing reductions, even if their income is below 100% FPL. There will be a 60-day special enrollment period starting on November 1, 2024 that allows newly eligible DACA recipients to sign up for coverage. Consumers who enroll during November 2024 can have their new Marketplace coverage begin as early as December 1, 2024. While there is pending litigation, DACA recipients can still enroll.
10. Network adequacy rules must be met. Starting in 2025, federal Marketplace plans will be required to meet maximum appointment wait-time standards (e.g., no more than a 10-business day wait for a behavioral health appointment, a 15-business day wait for routine primary care appointments, and 30 business days for non-urgent specialty care appointments). These plans are expected to have a “secret shopper” survey conducted starting in 2025 to test whether in-network providers are meeting these appointment wait times for new patients seeking primary and behavioral health care.

The pandemic-era continuous enrollment provision sustained Medicaid for millions of enrollees, making it easier for children to get on and stay on coverage. Between February 2020 and April 2023 with continuous enrollment in place, child enrollment in Medicaid and CHIP increased by 20%. While national child enrollment has since nearly returned to pre-pandemic levels, state child eligibility expansions may help to bolster coverage in the aftermath of the unwinding of the continuous enrollment provision.

During the pandemic, states took advantage of a range of flexibilities to facilitate access to Medicaid and CHIP coverage, such as eliminating or waiving premiums for Medicaid and CHIP. Following the end of continuous enrollment, recent federal policies have sought to extend coverage protections for children. The Consolidated Appropriations Act, 2023, required all states to implement 12-month continuous eligibility for children beginning on January 1, 2024. Expanding on that continuous eligibility policy to provide more stable coverage over a longer period of time for vulnerable populations, the Centers for Medicare and Medicaid Services (CMS) has encouraged states to seek approval to provide multi-year continuous eligibility for children through Section 1115 demonstration authority. CMS also published an Eligibility and Enrollment final rule earlier this year that eliminates lock-out periods for failure to pay premiums in CHIP and requires smoother transitions between Medicaid and separate CHIP programs, among other changes.

This policy watch identifies states that have expanded access to Medicaid and CHIP coverage for children or have adopted policies to make it easier for children to maintain coverage since the start of the pandemic. Data are from annual surveys of state Medicaid and CHIP program officials conducted by KFF and the Georgetown University Center for Children and Families.

Facilitating Medicaid/CHIP Coverage for Children

Building on the experience with continuous enrollment and other pandemic-era protections, since 2020 half of states (25) have taken steps or are planning actions to expand coverage or reduce enrollment barriers for children (Figure 1). Four states expanded coverage by increasing child income eligibility for Medicaid and CHIP and/or adopting the federal option to cover lawfully-residing immigrant children without the 5-year wait. Eighteen states have taken steps or are planning actions to reduce enrollment barriers for children, such as by pursuing multi-year continuous eligibility waivers for young children, eliminating or continuing to suspend premiums, or transitioning from a separate CHIP program to a CHIP-funded Medicaid expansion program. Three states have taken steps to both expand coverage and reduce enrollment barriers.

Expanding Coverage

Four states recently expanded coverage by increasing income eligibility levels for children in Medicaid and CHIP (Figure 2). In 2022 the Kansas legislature increased CHIP eligibility to 255% of the federal poverty level (FPL). In the past year, Arizona increased eligibility from 205% FPL to 230% FPL in its separate CHIP program, Maine raised Medicaid child eligibility from 213% FPL to 305% FPL, and North Dakota expanded Medicaid child eligibility to 205% FPL, up from 175% FPL. With these changes, Idaho is the only state with a child eligibility level below 200% FPL. Across all states, the median children’s upper eligibility level is 255% of the Federal Poverty Level (FPL) ($65,841 for a family of three in 2024). Twenty states now cover children at or above 300% FPL.

Since 2020, three states have newly taken up the federal option to cover lawfully residing immigrant children without the 5-year wait. Most lawfully residing immigrants must wait five years after they obtain qualified status before they can enroll in Medicaid or CHIP. However, states have the option to waive the five-year waiting period for lawfully residing children, otherwise known as the Immigrant Children’s Health Improvement Act (ICHIA) option. Georgia, Michigan, and New Hampshire recently adopted this option, joining 34 other states and the District of Columbia that adopted prior to 2020 (Figure 3). Indiana plans to eliminate the waiting period for children and pregnant individuals in 2025.

Six states (Connecticut, Maine, New Jersey, Rhode Island, Utah, and Vermont) newly provide fully-state funded coverage to all income-eligible children regardless of immigration status since 2020. These programs extend coverage to immigrant children who are ineligible for federally funded coverage because they do not have qualified status or because they are undocumented. Connecticut only covers children under age 13 and Utah caps the number of children who can be enrolled. Six states (California, Illinois, Massachusetts, New York, Oregon, Washington) and the District of Columbia began providing comprehensive state-funded coverage for children regardless of immigration status prior to the COVID-19 public health emergency. By 2025, Colorado and Minnesota plan to offer state-funded Medicaid-like coverage to income-eligible children regardless of immigration status.

Reducing Enrollment Barriers

Thirteen states have federal approval or are in the process of developing waivers to expand upon the 12-month continuous eligibility requirement and implement multi-year continuous eligibility for young children. Continuous eligibility has been shown to reduce Medicaid disenrollment and “churn” rates (rates of individuals temporarily losing Medicaid coverage and then re-enrolling within a short period of time). When individuals churn on and off coverage, the gaps in coverage may limit access to care or lead to delays in getting needed care, which can be especially problematic for young children who receive frequent screenings and check-ups. In September 2022, CMS approved Oregon’s waiver to implement continuous eligibility for children from birth to age six as well as 24 months of continuous eligibility for nearly all enrollees ages six and older. Since then, CMS has approved multi-year continuous eligibility requests for children in Washington and New Mexico. Six states have submitted section 1115 waivers and four states are in the process of developing waivers to implement multi-year continuous eligibility for young children (Table 1).

Twelve states have eliminated Medicaid or CHIP premiums since 2020 or continue to suspend premiums, reducing financial barriers to coverage for children. While new rules related to 12-month continuous eligibility prohibit states from disenrolling children because of failure to pay premiums during the continuous eligibility period, premiums can still act as a barrier to enrollment because states can require families to pay the initial premium before they can enroll their child. During the COVID-19 public health emergency, most states that charged premiums suspended or waived them for some or all enrollees. Nine states — California, Colorado, Illinois, Maine, Maryland, Michigan, New Jersey, North Carolina, and Utah — have eliminated Medicaid and/or CHIP premiums since 2020. Utah eliminated CHIP premiums in July but increased other cost-sharing requirements at the same time (Figure 4). In three states that charged premiums prior to the pandemic (Arizona, Delaware, and Vermont), premiums remain suspended. Delaware is awaiting CMS approval to discontinue premiums entirely and Vermont has suspended premiums indefinitely. A total of 18 other states still charge premiums. Twenty states and the District of Columbia did not charge premiums or enrollment fees prior to 2020.

Since 2020, a total of five states (Illinois, Maine, North Carolina, Kentucky, and Wyoming) have transitioned all child enrollees from the state’s separate CHIP program to a CHIP-funded Medicaid expansion program. Rules governing administration of and eligibility processing in separate CHIP programs differ from Medicaid. Sixteen additional states choose to cover all uninsured children eligible for CHIP in Medicaid (known as M-CHIP), but states can also choose to cover uninsured children eligible for CHIP through a separate CHIP program only (2 states) or through a combination of a separate CHIP and M-CHIP (28 states) (Figure 5). Covering CHIP children in Medicaid streamlines administration and provides all children with child-focused EPSDT Medicaid benefits and other Medicaid protections, including limitations on cost-sharing, while operating a separate CHIP allows states to alter benefit packages and delivery systems and provides more flexibility to impose premiums and cost sharing. Covering CHIP children in Medicaid can also prevent children from losing coverage during necessary transitions between Medicaid and separate CHIP programs.

In a recent column, KFF President and CEO Drew Altman wrote that the program most likely to be in the crosshairs if Republicans take control this November is Medicaid because Social Security and Medicare are largely off the table, leaving Medicaid as the likely source for savings needed to pay for proposed tax cuts. Of these three programs, Medicaid and the Children’s Health Insurance Program (CHIP) is the smallest in terms of federal outlays because Medicaid is jointly financed by the federal government and the states, though it covers more people than Medicare or Social Security and still represents a substantial amount of federal spending. In an effort to reduce federal Medicaid spending, Former President Trump has previously supported policies to repeal or weaken the Affordable Care Act (ACA), as well as cap and reduce Medicaid financing. These proposals stand in sharp contrast to proposals that Vice President Harris supports to protect and strengthen Medicaid and the ACA.

Because Medicaid is administered by states within broad federal rules, Medicaid programs and spending vary across states. Total Medicaid spending depends on multiple factors, including the number and mix of enrollees, their use of health care and long-term services and supports, the prices of Medicaid services, and state policy choices about benefits, provider payment rates, and other program factors. Medicaid financing is complex. States are guaranteed federal matching dollars without a cap for qualified services provided to eligible enrollees. The match rate (the share that the federal government pays, known as the federal medical assistance percentage or “FMAP”) varies across states, some services and populations, and sometimes is adjusted during economic downturns:

• FMAP variation across states: The match rate for most Medicaid enrollees is determined by a formula in the law that provides a match of at least 50% and provides a higher federal match rate for states with lower per capita income (up to a cap of 83%). For FY 2025, this ranged from 50% in a number of states to 76.9% in Mississippi. The territories and the District of Columbia have match rates that are set in statute.
• FMAP variation across some services and populations: Most notably, the ACA expansion group is financed with a 90% federal match rate, so states pay 10%. The American Rescue Plan Act included an additional temporary fiscal incentive to states that newly adopt the Medicaid expansion. Family planning services are also reimbursed at a 90% match rate; Indian Health Services (IHS) provided in an IHS facility are reimbursed at 100% match rate.
• FMAP variation during economic downturns: During economic downturns, enrollment in Medicaid grows, increasing state Medicaid costs while state tax revenues typically decline. Due to the federal match, as spending increases during economic downturns, so does federal funding. During the pandemic-induced recession and the two economic downturns prior to the pandemic, Congress enacted legislation that temporarily increased the federal match rate to provide increased support for states to help fund Medicaid and other services. During the pandemic, the enhanced match was tied to a requirement that states provide continuous enrollment for Medicaid enrollees. As a result of the enhanced match rate, state spending during the pandemic declined despite historic increases in Medicaid enrollment. This also illustrates how decreases to the federal match rate have the opposite impact and increase costs for states.

As a result of all of these factors combined, the federal government paid 71% ($573 billion) of the costs of Medicaid ($804 billion) in 2022. This share is slightly higher than historic shares due to the enhanced pandemic match rate, but there is variation across states (Figure 2). The combination of low per capita income and adopting the ACA expansion are both factors in determining the overall share of federal spending on Medicaid. While the federal share of Medicaid spending varies across states, so does the total amount of federal Medicaid dollars coming into the state. States with the largest populations (California, New York, Texas, Pennsylvania, Ohio) receive the most federal Medicaid funding.

Prominent conservative proposals to reduce federal Medicaid spending typically feature one (or a combination) of approaches:

• Converting Medicaid to a block grant, which would provide a fixed amount of federal funding to each state and greater flexibility over eligibility and benefits;
• Capping federal spending on a per enrollee basis;
• Altering the FMAP, such as by eliminating the enhanced match for the ACA expansion group, lowering the FMAP floor, or decreasing the FMAP to 50 percent for all eligibility groups, states, and services; or
• Restricting or eliminating the use of provider taxes, which states use to fund their share of Medicaid spending, and thus reducing federal matching funds.

These approaches for restricting federal Medicaid spending would not result in lower overall costs, but instead would shift costs to states. States would have to make tough choices about whether to reduce coverage, services and provider rates in Medicaid, or whether to raise revenues or cut other state spending. Notably, over half of Medicaid spending is for enrollees who qualify on the basis of age or disability. These enrollees typically use long-term services and supports that are not covered by Medicare or private insurance and extremely expensive to obtain paying out of pocket.

The effect of various Medicaid financing changes would be uneven across states. Certain states (like those that have higher shares of federal spending, adopted expansion, have higher health care costs, populations with worse health status or higher health needs, or states that rely more heavily on intergovernmental transfers or provider taxes) could face more difficulty maintaining their programs.

Significant cuts to Medicaid could also run up against public opinion. Two-thirds of adults in the U.S. say they have had some connection to the Medicaid program and three-fourths of the public have favorable views of the program (with majorities across political parties). In addition, the majority of Medicaid enrollees and the public prefer to keep Medicaid as it is today with the federal government guaranteeing coverage for low-income people, setting standards for who states cover and what benefits people get, and matching state Medicaid spending as the number of people on the program goes up or down. How the public would ultimately view changes to Medicaid would depend on how the debate is framed and what other issues, such as tax cuts, are in play. While Medicaid has not been a prominent part of the public debate during the campaign, it is likely to remain a divisive issue, and the election could have significant consequences for financing and coverage of the program.

Note: This content was updated on July 1, 2025 to reflect new regulations eliminating ACA Marketplace eligibility for DACA recipients.

On May 3, 2024, the Biden-Harris administration published new regulations extending eligibility for Affordable Care Act (ACA) Marketplace coverage to Deferred Action for Childhood Arrivals (DACA) recipients. Under these regulations, the definition of lawfully present would newly include DACA recipients for the purposes of eligibility to purchase coverage through the ACA Marketplaces and to receive premium tax credits and/or cost sharing reductions or to enroll in Basic Health Program (BHP) coverage in states with those programs. The regulation became effective November 1, 2024, allowing for enrollment during the 2025 Open Enrollment Period, which runs from November 1, 2024, to January 15, 2025. The administration estimated that 100,000 uninsured DACA recipients will receive coverage under the new rule. However, due to recent court decisions, DACA recipients in 19 states remain ineligible to enroll in ACA Marketplace coverage. On June 25, 2025, the Centers for Medicare and Medicaid Services (CMS) finalized a rule that will once again exclude DACA recipients from the definition of “lawfully present” immigrants for the purposes of health coverage, making them ineligible to purchase coverage through the ACA Marketplaces beginning 60 days after the final rule’s publication. This brief provides an overview of the DACA program, discusses its status and potential impacts of the health coverage expansion, and highlights key issues to consider.

Overview of DACA

DACA was originally established via executive action in June 2012 to protect certain undocumented immigrants who were brought to the U.S. as children from removal proceedings and receive authorization to work for renewable two-year periods. To be eligible, individuals must have arrived in the U.S. prior to turning 16 and before June 15, 2007; be under the age of 31 as of June 15, 2012 (i.e., under age 43 as of 2024); be currently enrolled in school, have completed high school or its equivalent or be a veteran; and have no lawful status as of June 15, 2012. As of June 2024, there were over 530,000 active DACA recipients residing in the U.S. (Box 1).

Prior to the 2024 health coverage expansion, DACA recipients were ineligible for any federally funded health coverage. Previously, individuals with DACA status were not considered lawfully present for purposes of health coverage eligibility and remained ineligible for Medicaid, the Children’s Health Insurance Program (CHIP), and ACA Marketplace coverage despite having a deferred action status, which otherwise qualified for Marketplace coverage. These eligibility restrictions left DACA recipients with the same limited health coverage options as undocumented immigrants, who are ineligible for federally funded health coverage programs. Some states have fully state funded health coverage programs for low-income immigrants regardless of immigration status, including DACA recipients, but they vary in eligibility and scope of benefits.

While most DACA recipients are working and in good health, many face challenges accessing health coverage and care, including high uninsured rates. Based on KFF analysis of federal survey data, a majority of immigrants who are likely eligible for DACA are working and have self-reported excellent or very good health. However, data show that DACA recipients continue have high uninsured rates, reflecting their limited eligibility for coverage, as is the case for likely undocumented immigrants. Overall, half of likely undocumented immigrant adults in the U.S. lack health insurance coverage, significantly higher than their immigrant counterparts who are lawfully present (18%) or naturalized citizens (6%) (Figure 1).

ACA Marketplace Expansion to DACA Recipients

On May 3, 2024, the Biden-Harris administration published new regulations making DACA recipients newly eligible to purchase ACA Marketplace coverage with premium tax credits and cost sharing reductions beginning November 1, 2024. Under these regulations, active DACA recipients would be considered lawfully present for the purposes of health coverage eligibility and will therefore be able to enroll in health insurance plans through the ACA Marketplaces for the first time during the 2025 ACA Open Enrollment Period between November 1, 2024, and January 15, 2025. Income-eligible DACA recipients would also qualify for premium tax credits and/or cost sharing reductions and be able to enroll in BHP coverage in states that have implemented it (currently MN and OR). DACA recipients would be able to start using their new ACA coverage as early as December 1, 2024, under the Special Enrollment Period.

The administration estimated that 100,000 uninsured DACA recipients will receive health coverage under the new rule which will likely result in improved access to care and financial security for DACA recipients and their families and ultimately improve health outcomes. Data from the 2023 KFF/LA Times Survey of Immigrants show that immigrants who lack health insurance coverage face a range of barriers accessing and using health care in the U.S. Uninsured immigrant adults are about three times as likely as their counterparts with insurance coverage to report not having a usual source of care other than an emergency room (42% vs. 13%) and not having had a doctor’s visit in the past 12 months (52% vs. 18%); they also are about twice as likely to report skipping or postponing care in the past 12 months (36% vs. 19%) (Figure 2). Uninsured immigrant adults also are more likely than those with insurance coverage to report unfair treatment by a health care provider and to report challenges obtaining respectful and culturally competent health care.

The Trump administration finalized new regulations that would make DACA recipients ineligible for ACA Marketplace coverage. On June 25, 2025, the Centers for Medicare and Medicaid Services (CMS) finalized a rule that will once again exclude DACA recipients from the definition of “lawfully present” immigrants for the purposes of health coverage, making them ineligible to purchase coverage through the ACA Marketplaces beginning 60 days after the final rule’s publication. Thousands of DACA recipients living and working across the U.S. could lose access to affordable health coverage options due to these new regulations.

Issues to Consider

The future of the DACA program remains uncertain due to ongoing litigation and recent court rulings. Subject to ongoing litigation and court rulings challenging the legality of the DACA program, while the Department of Homeland Security (DHS) is accepting first-time DACA requests, it is unable to process them. However, DHS is continuing to process DACA renewal requests and related requests for employment authorization while it awaits a decision by the court. President Trump tried to end DACA during his first term but was blocked by the Supreme Court in 2020. His campaign has said that he will try again to eliminate DACA protections if elected. However, in an interview, President Trump indicated that he would work on addressing the status of “Dreamers” and indicated a willingness to work with Democrats on the issue, although the details of this proposed plan remain unclear. However, in June 2025, the Centers for Medicare and Medicaid Services finalized new regulations that exclude DACA recipients from the definition of “lawfully present” immigrants for the purposes of health coverage, which would make DACA recipients across the U.S. ineligible for purchasing coverage through the ACA Marketplaces.

The number of people who are eligible for DACA has been dwindling over time and there is no pathway to citizenship for DACA recipients. Given its eligibility requirements as well as legal challenges to the program, the number of people who can receive DACA has decreased over time from a high of 700,000 in 2017 to roughly 530,000 as of 2024. The American Dream and Promise Act of 2023 would provide a pathway to lawful permanent resident status and eventually citizenship for undocumented immigrants who were brought to the U.S. as children and who meet certain requirements. However, different versions of the Act have been proposed to Congress since 2001 but have never been passed suggesting that there is no clear pathway to passage of such legislation.

This fact sheet does not reflect recent changes that have been implemented by the Trump administration, including a foreign aid review and restructuring. For more information, see KFF’s Overview of President Trump’s Executive Actions on Global Health.

Key Facts

• Neglected tropical diseases (NTDs) are a set of infectious diseases grouped together due to their often chronic, disfiguring, and stigmatizing impact; their close association with poverty; and their geographic overlap.
• While there are numerous NTDs in the world, the World Health Organization (WHO) has highlighted over 20 that particularly impact poor, politically marginalized populations; cause significant morbidity and/or mortality; are neglected by research; and can be controlled using effective methods.
• In recent years, the U.S. government (U.S.) has affirmed its support for global NTD goals, including eradicating, eliminating, and controlling several NTDs.
• The U.S. has become more involved in global NTDs since launching its first NTD program in 2006 at the U.S. Agency for International Development (USAID) with a focus on five NTDs that are among the most prevalent NTDs globally but can be controlled and even eliminated with low-cost and effective interventions.
• Total U.S. funding for NTDs increased from $15 million in FY 2006, which was the first year Congress appropriated funds for NTDs, to approximately $115 million in FY 2024.

Global Situation

NTDs have garnered greater attention from the U.S. government and other global donors over the past nearly 20 years, spurred on by growing recognition of their potential threat to the achievement of the Millennium Development Goals (MDGs) and their successor, the Sustainable Development Goals (SDGs). In addition, the development and expansion of an integrated NTD treatment approach capitalized on the availability of safe and effective treatments for the most prevalent NTDs.

NTDs are among the top 12 major communicable disease causes of ill health globally, behind lower respiratory infections, diarrheal diseases, tuberculosis, malaria, and HIV, among others.¹  NTDs are grouped together due to their often chronic, disfiguring, and stigmatizing impact; their close association with poverty; and their geographic overlap.

Impact

NTDs have low mortality but high morbidity rates. Approximately one-fifth of the world’s population (1.6 billion people) require NTD interventions (both preventive and curative). Each year, approximately 200,000 people die as a result. Infection with a NTD may result in severe disability, disfigurement, blindness, and malnutrition, and individuals are often infected with multiple NTDs simultaneously. The health impact of NTDs negatively affects economic development, hampers educational achievement and cognitive development, and reduces agricultural productivity and food security.

NTDs span the globe; in 2021, 179 countries reported at least one case of NTDs. However, the majority of the NTD burden is concentrated in low- and middle-income countries in Africa, Asia, and Latin America. People living in areas lacking access to clean water, health services, and adequate housing and sanitation, in both rural and urban settings, are among the most impacted by NTDs. Women and children in particular are most at risk of infection, since they are more exposed to NTDs and more often face barriers to accessing treatment, particularly those living in remote areas.

Major NTDs

While there are numerous NTDs in the world, the World Health Organization (WHO) has highlighted 21 that particularly impact poor, politically marginalized populations; cause significant morbidity and/or mortality; are neglected by research; and can be controlled using effective methods.² 

Five “tool-ready” NTDs, those that can be controlled and even eliminated due to the availability of low-cost and effective interventions, are among the most prevalent NTDs (see Table 1). This subset of NTDs is increasingly the focus of donor efforts, including USAID’s NTD Program.

Interventions

A number of strategies have been successful in controlling and, in some areas, even eliminating certain NTDs. Although many interventions are relatively inexpensive, challenges persist in delivering tools and services to the most at-risk populations.

The recommended strategy for NTD elimination is an integrated control approach, often targeting multiple NTDs simultaneously, through mass drug administration (MDA) and other community-level transmission control measures. MDA is the regular distribution of medicines to entire at-risk populations, regardless of infection status. The use of MDA allows programs to reach more people and improve the likelihood of suppressing transmission. Implementation of MDA is often made possible through donations from pharmaceutical companies. In addition to MDA, other measures such as promoting clean water, sanitation, and hygiene (WASH), good veterinary public health, and vector control also play critical roles in addressing the underlying causes of NTDs.

Global Goals

As NTDs began to receive greater attention and global efforts have expanded over the past nearly twenty years, major global NTD goals have been set recently through:

SDG 3: End the Epidemic of NTDs

Adopted in 2015 by all member-states of the United Nations, the Sustainable Development Goals (SDGs) included a target of ending the epidemic of NTDs by 2030 as part of SDG 3 (“ensure healthy lives and promote well-being for all at all ages”). The SDGs are the successor to the Millennium Development Goals (MDGs), which did not include a specific NTD indicator.

WHO Roadmap for NTDs 2021-2030

The Roadmap outlines targets and strategies for global NTD control, elimination, and eradication efforts from 2021 through 2030. Among its goals are the eradication (permanent reduction of a disease’s worldwide incidence to zero with no risk of reintroduction) of dracunculiasis (Guinea worm disease) and yaws and the elimination (interruption of transmission in a defined geographical area(s), marked by a reduction of incidence to zero with a minimal risk of reintroduction) of human African trypanosomiasis (gambiense), leprosy, and onchocerciasis by 2030. In addition to the Roadmap’s eradication and elimination targets, it also lays out overall targets including 90% reduction in the number of people requiring interventions for NTDs, a 75% reduction in DALYs related to NTDs, and at least 100 countries eliminating at least one NTD.

Kigali Declaration on Neglected Tropical Diseases

In 2022, the Kigali Declaration, endorsed by key public and private stakeholders, laid out global NTD goals (affirming those in the SDGs and Roadmap) and commitments. It aims to improve partner efforts to coordinate and collaborate across their respective efforts in order to help eliminate NTDs. Among its goals are the elimination of at least one NTD in 100 countries and reduction of people requiring NTD interventions by 90% by 2030. These goals are in alignment with some of the WHO Roadmap goals. The Kigali Declaration is the successor to the London Declaration on NTDs (2012-2020).

U.S. Government Efforts

Over the past nearly twenty years, U.S. attention to and funding for NTDs have increased markedly. Historically, the U.S. government’s response to NTDs was relatively limited, focusing largely on research and surveillance conducted by the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), and the Department of Defense (DoD). In 2006, Congress first appropriated funds to the U.S. Agency for International Development (USAID) for integrated NTD control, after which the agency launched its NTD Program. In 2008, the U.S. announced expanded NTD efforts, building on USAID’s NTD Program. In 2012, the U.S. signed onto the London Declaration, and shortly afterward, the U.S. adopted a longer term global health goal of protecting communities from infectious diseases and highlighted the important role of NTD efforts in achieving this goal.

Organization

USAID serves as the lead implementing agency for U.S. NTD efforts. Several other agencies, including NIH, CDC, DoD, and the U.S. Food and Drug Administration (FDA), are also involved in responding to NTDs worldwide. Collectively, U.S. activities have helped reach more than 30 countries.³ 

USAID

USAID’s NTD Program targets five “tool-ready” NTDs (see Table 1). Having scaled up from five countries in 2006, it now spans 26 countries, mostly in sub-Saharan Africa and Southeast Asia, and has one regional program, which reaches an additional eight countries in the Americas. Using interventions such as MDA, the U.S. supports endemic countries in scaling up and developing their capacity to manage NTD control programs. The program’s goals are to control and eliminate diseases, strengthen the NTD scientific and program evidence, support sustainable country-led programs, and expand partnerships with key stakeholders.

Other U.S. Efforts

Other agencies, including NIH, CDC, and DoD, support NTD control efforts through implementation assistance of NTD interventions, technical assistance to help develop guidelines for NTD control and improve monitoring systems, and research and development (R&D) activities focused on developing new NTD tools and encouraging the adoption of existing NTD tools. These efforts include a focus on the USAID-targeted NTDs, as well as others (such as dengue, and neglected tropical fungal diseases including mycetoma, chromoblastomycosis, and sporotrichosis, among others). In addition to these efforts, the FDA administers the congressionally-authorized Tropical Disease Priority Review Voucher Program, which provides for a voucher to a developer that is awarded at the time of approval for a product meant to prevent or treat an eligible NTD. The voucher, which can subsequently be redeemed for a priority review of an application for another product, is designed as an incentive for the private sector to invest in new NTD drug development. A number of vouchers have already been awarded by the FDA.

Multilateral and Other Efforts

U.S. NTD efforts are coordinated with a number of international partners (like WHO and private sector entities), regional strategies (like the Regional Strategic Framework for sustaining, accelerating, and innovating to end neglected tropical diseases in the South-East Asia Region, 2024-2030), and funding mechanisms (like the END Fund). For example, the pharmaceutical industry donates several NTD drugs to many of the countries that also receive USAID NTD support; USAID has estimated the value of these donations in U.S.-supported countries at approximately $29.9 billion since 2007.

Funding

Congress first appropriated funding for NTDs in FY 2006, and while total U.S. funding for NTDs has risen overall since then (from $15 million in FY 2006 to approximately $115 million in FY 2024), funding was flat at around $100 million for several years (see Figure for most recent funding data). The Biden Administration has requested level funding for NTDs for FY 2025. U.S. funding for NTDs is provided through the Global Health Programs account at USAID.

1. Based on WHO, “Global Health Estimates 2021: Global DALYs by cause, age, and sex, 2000-2021,” Global Health Estimates 2021 Summary Tables, https://www.who.int/data/gho/data/themes/mortality-and-global-health-estimates/global-health-estimates-leading-causes-of-dalys. ↩︎
2. WHO, “Global report on neglected tropical diseases 2024,” https://www.who.int/publications/i/item/9789240091535. The list of NTDs are: Buruli ulcer; Chagas disease; dengue and chikungunya; dracunculiasis (Guinea worm disease); echinococcosis; foodborne trematode infections; human African trypanosomiasis (sleeping sickness); leishmaniasis; leprosy; lymphatic filariasis; mycetoma, chromoblastomycosis and other deep mycoses; noma, onchocerciasis (river blindness); rabies; scabies and other ectoparasites; schistosomiasis; snakebite envenoming; soil-transmitted helminths; taeniasis and cysticercosis; trachoma; and yaws. ↩︎
3. Other US. efforts may reach additional countries. ↩︎

The U.S territories – American Samoa, the Commonwealth of the Northern Mariana Islands (CNMI), Guam, Puerto Rico, and the U.S. Virgin Islands (USVI) – have faced an array of longstanding fiscal and health challenges that were exacerbated by somewhat recent natural disasters and the COVID-19 pandemic. Over 1.7 million people residing in the territories were enrolled in Medicaid in fiscal year (FY) 2023. Medicaid financing in the territories differs from the states due to a statutorily set Federal Medical Assistance Percentage (FMAP) and an annual ceiling in federal funding that has historically resulted in lower levels of funding and often health care coverage and access.

Over time, Congress has provided temporary supplemental federal funding and increases to the FMAP rate in response to emergencies beyond the Medicaid allotments set in statute. Most recently, the Families First Coronavirus Response Act (FFCRA) significantly increased allotments for the territories and the 2023 Consolidated Appropriations Act (CAA) included a permanent statutory increase to 83% (from 55%) for most of the territories’ Medicaid allotments and FMAP rates, except Puerto Rico. In Puerto Rico, the allotments are set in statute through FY 2027, and the FMAP was increased to 76% and set to expire after FY 2027 and return to 55% without legislative action.

While neither candidate has announced detailed policy proposals in the campaign, the outcome of the 2024 election could have implications for the American territories. In a recently released policy fact sheet, Vice President Harris highlights several initiatives to support Puerto Rico, including calling for Congress “to pursue parity and equal access to key federal programs that support health care, nutrition, and other critical needs for low-income families, seniors, and people with disabilities.” In addition, the Biden-Harris administration proposed eliminating Medicaid funding caps for the American territories and bringing FMAP rates in parity with the states in their FY 2025 budget. In contrast, former President Trump previously proposed reducing Medicaid funding for Puerto Rico and has supported proposals to cap and reduce Medicaid financing and the FMAP, which could impact the territories as well. This issue brief provides background on how Medicaid financing differs between U.S. territories and states and the implications of these differences.

How does Medicaid in the territories differ from the states?

Unlike in the 50 states and D.C., annual federal funding for Medicaid in the U.S. territories is subject to a statutory cap and fixed matching rate. Both the capped federal allotment (known as the Section 1108(g) allotment) and the territories’ FMAP are fixed in statute. Annual federal Medicaid funding is set in statute for Puerto Rico for FY 2023 through FY 2027 and increases in the allotments are tied to the medical care component of the Consumer Price Index for All Urban Consumers (CPI-U) for the rest of the territories. This funding arrangement is unlike federal Medicaid funding for states, where federal dollars are uncapped and the FMAP is adjusted annually based on a state’s relative per capita income. In addition, the territories receive Section 1935(e) funding, also known as the Enhanced Allotment Program (EAP), which can be used to provide prescription drug coverage under Medicaid for low-income Medicare beneficiaries who would otherwise be eligible for subsidies under Medicare Part D. Most territories receive funding for Medicaid data systems, and Puerto Rico receives additional funds for physician payment rates and for program integrity through FY 2027.

Medicaid programs in the territories have programmatic differences in coverage and benefits compared to the states. Unlike the states, the territories develop their own measures rather than use federal poverty levels (FPL) to determine eligibility for Medicaid for the population. CNMI and American Samoa operate Medicaid programs under waivers so they are not subject to most program requirements, including flexibility that allows them to waive coverage of any benefits that are mandatory in the states when needed.

What are recent Medicaid financing changes for the Territories?

The 2023 CAA included a permanent statutory increase in territories’ Medicaid FMAP rate, except in Puerto Rico, where the increase will expire at the end of FY 2027. Congress has previously authorized both permanent and supplemental increases in the FMAP rate for the territories broadly and in response to specific emergency events (Table 1). Following the passage of the Affordable Care Act (ACA), the FMAP rate for territories was increased from 50% to 55% in 2011, and at the beginning of FY 2020, during the COVID-19 pandemic, the FMAP was temporarily increased to 100%. For the remainder of FY 2020 through the beginning of FY 2023, Congress increased FMAP rates from 55% to 83% for American Samoa, CNMI, Guam, and USVI and from 55% to 76% for Puerto Rico (with an additional increase of 6.2% if certain maintenance of eligibility requirements were met). With the 2023 CAA, Congress made the temporary FMAP increase to 83% permanent for American Samoa, CNMI, Guam, and the USVI, while authorizing a temporary increase to Puerto Rico’s FMAP to 76% through FY 2027. The law also provides 100% federal funding for qualifying data system improvements for American Samoa, CNMI, Guam, and USVI, up to $20 million for all four of the territories.

In addition to the change in the FMAP rates, annual federal capped funding for the territories increased substantially in FY 2020. The FFCRA increased allotments for each of the territories for FY 2020 and FY 2021 and then CMS used these levels as the new base for FY 2022 and beyond, except for Puerto Rico, where capped amounts are set in statute through FY 2027. The annual capped funding for Puerto Rico will be $3.475 billion for FY 2025, $3.645 billion for FY 2026, and $3.825 billion for FY 2027. After FY 2027, the allotments for Puerto Rico will be calculated from the much lower FY 2019 base without a legislative change.

What are the implications of the Medicaid financing structure in the territories?

The capped federal Medicaid funding structure in the territories contributes to cost shifts to the territories and/or coverage restrictions. Once a territory exhausts its capped federal funds, the territory must use local funds to cover costs of coverage or may suspend or limit services. Historically, all of the territories have reported depleting the capped federal funds before the fourth quarter of the year. Medicaid programs in American Samoa and CNMI have recently suspended or limited a wide range of services for parts of the fiscal year due to funding constraints, despite the recent increases in allotments and FMAP rates.

In the absence of additional statutory changes, annual federal allotments for Medicaid in Puerto Rico will drop and the FMAP rate will drop to 55% in FY 2028. Under the 2023 CAA, Puerto Rico’s annual federal allotment will drop in FY 2028 because it will be re-calculated based on the annual FY 2019 cap adjusted to the medical component of the CPI-U without regard for the additional funding received between FY 2020 and FY 2027, and the FMAP will return to 55% in FY 2028. Both of these changes would result in significant reductions in federal Medicaid funding for Puerto Rico. Beyond adjustments for Puerto Rico, proposals like the Territories Health Equity Act would treat the territories like states for Medicaid funding and eliminate federal funding caps if enacted by Congress.

Limits on federal Medicaid funding contribute to increasing challenges for the territories in addressing health care needs of their residents given growing poverty, infrastructure, and environmental challenges. Studies have found that the territories rank worse than the states on health care quality measures and health outcomes. The territories also have higher rates of poverty and unemployment, and all the territories, with the exception of Puerto Rico, also have higher rates of uninsured people than the U.S. population overall (Appendix Figure 1). Limitations in federal data on the American territories, including gaps in federal statistics and Medicaid claims reporting, and limited local public health workforce capacity may reduce government capabilities to understand and address these challenges. The territories have also become increasingly susceptible to natural disasters and environmental hazards due to climate change as well as U.S. colonial and military activity, which can exacerbate population loss due to outmigration and further negatively impact island economies. Recent disaster events in Puerto Rico have also shown how they negatively impact health outcomes and the mental health of residents in the long-term.

Appendix

Health insurance is expensive and can be difficult to afford for people with lower or moderate incomes. In response, the Affordable Care Act (ACA) provides sliding-scale subsidies that lower premiums and insurers offer plans with reduced out-of-pocket (OOP) costs for eligible individuals.

This brief provides an overview of the financial assistance provided under the ACA for people purchasing coverage on their own through health insurance Marketplaces (also called exchanges).

Health Insurance Marketplace Subsidies

There are two types of financial assistance available to Marketplace enrollees. The first type, called the premium tax credit, reduces enrollees’ monthly payments for insurance coverage. The second type of financial assistance, the cost sharing reduction (CSR), reduces enrollees’ deductibles and other out-of-pocket costs when they go to the doctor or have a hospital stay. To receive either type of financial assistance, qualifying individuals and families must enroll in a plan offered through a health insurance Marketplace.

Premium Tax Credit

Premium tax credits can be applied to Marketplace plans in any of four “metal” levels of coverage: bronze, silver, gold, and platinum. Bronze plans tend to have the lowest premiums but have the highest deductibles and other cost sharing, leaving the enrollee to pay more out-of-pocket when they receive covered health care services, while platinum plans have the highest premiums but very low out-of-pocket costs.

Also offered on the Marketplace are catastrophic health plans with even lower premiums and higher cost sharing compared to bronze plans. Catastrophic plans are generally only available to individuals younger than 30, and premium tax credits cannot be applied to these plans.

Who is eligible for the premium tax credit?

To receive a premium tax credit for 2025 coverage, a Marketplace enrollee must meet the following criteria:

• Have a household income at least equal to the Federal Poverty Level (FPL), which for the 2025 benefit year will be determined based on 2024 poverty guidelines (Table 1).
• Not have access to an employer plan (including a family member’s employer) that both meets minimum value and is considered affordable. For 2025, the threshold that determines if an employer plan is affordable is if the premium is equal to or less than 9.02 percent of one’s household income.
• Not be eligible for coverage through Medicare, Medicaid, or the Children’s Health Insurance Program (CHIP).
• Have U.S. citizenship or proof of legal residency. (Lawfully present immigrants whose household income is below 100 percent FPL can also be eligible for tax subsidies through the Marketplace if they meet all other eligibility requirements.)
• If married, must file taxes jointly.

Income: For the purposes of the premium tax credit, household income is defined as the Modified Adjusted Gross Income (MAGI) of the taxpayer, spouse, and dependents who are required to file a tax return. The MAGI calculation includes income sources such as wages, salary, foreign income, interest, dividends, and Social Security.

Employer coverage: Employer coverage is considered affordable if the required premium contribution is no more than 9.02 percent of household income in 2025. The Marketplace will look at both the required employee contribution for self-only and (if applicable) for family coverage. If the required employee contribution for self-only coverage is affordable, but the required employee contribution is more than 9.02 percent of household income for family coverage, the dependents can purchase subsidized exchange coverage while the employee stays on employer coverage.

The employer’s coverage must also meet a minimum value standard that requires the plan to provide substantial coverage for physician services and for inpatient hospital care with an actuarial value of at least 60 percent (meaning the plan pays for an average of at least 60 percent of all enrollees’ combined health spending, similar to a bronze plan). The plan must also have an annual OOP limit on cost sharing of no more than $9,200 for self-only coverage and $18,400 for family coverage in 2025.

People who are offered employer-sponsored coverage that fails to meet either the affordability threshold or minimum value requirements can qualify for Marketplace subsidies if they meet the other criteria listed above.

Eligibility for Medicaid: In states that have expanded Medicaid under the ACA, adults earning up to 138 percent FPL are generally eligible for Medicaid and not for Marketplace subsidies. In states that have not adopted Medicaid expansion, adults with income as low as 100 percent FPL can qualify for Marketplace subsidies. However, those with incomes lower than 100 percent FPL are generally not eligible for tax credits or Medicaid unless they meet other state eligibility criteria. KFF estimates that 1.5 million Americans living in non-expansion states fall into this coverage gap.

Certain lawfully present immigrants are exempt from the rule restricting tax credit eligibility for adults below the poverty level. Other federal rules restrict Medicaid eligibility for lawfully present immigrants, other than pregnant women, refugees, and asylees, until they have resided in the U.S. for at least five years. Immigrants who would otherwise be eligible for Medicaid but have not yet completed their five-year waiting period may instead qualify for tax credits through the Marketplace. If an individual in this circumstance has an income below 100 percent of poverty, for the purposes of tax credit eligibility, his or her income will be treated as though it is equal to the poverty level. Exceptions are also made for Deferred Action for Childhood Arrivals (DACA) recipients, who became newly eligible for Marketplace coverage after the Biden-Harris administration passed new regulations in May 2024 expanding the definition of lawfully present to include DACA recipients. Immigrants who are not lawfully present are ineligible to enroll in health insurance through the Marketplace, receive tax credits through the Marketplaces, or enroll in non-emergency Medicaid and CHIP.

What amount of premium tax credit is available?

The premium tax credit limits an individual’s contribution toward the premium of the “benchmark” plan, the second-lowest cost silver plan in their Marketplace. This “required individual contribution” is set on a sliding income scale. In 2025, for individuals with income up to 150 percent FPL, the required contribution is zero, while at an income of 400 percent FPL or above, the required contribution is 8.5 percent of household income (Table 2). Individuals making above 400 percent FPL whose required contribution for a benchmark silver premium is greater than the actual cost of a benchmark silver plan relative to their household income would be ineligible for subsidies.

These contribution amounts were set by the American Rescue Plan Act (ARPA) and later temporarily extended by the Inflation Reduction Act (IRA). Prior to the ARPA, the required contribution percentages ranged from about two percent of household income for people with poverty level income to nearly 10 percent of household income for people with income from 300 to 400 percent FPL. In addition, prior to the ARPA, people with incomes above 400 percent FPL were not eligible for premium tax credits.

The amount of tax credit is calculated by subtracting the individual’s required contribution from the actual cost of the “benchmark” plan. So, for example, if the benchmark plan costs $6,000 annually, the required contribution for someone with an income of 150 percent FPL ($22,590 in 2025) is zero, resulting in an annual premium tax credit of $6,000. If that same person’s income equals 250 percent FPL (or $37,650 in 2025), the individual contribution is four percent of $37,650, or $1,506 per year, resulting in an annual premium tax credit of $4,494.

The premium tax credit can then be applied toward any other plan sold through the Marketplace (except Catastrophic coverage). The amount of the tax credit remains the same, so a person who chooses to purchase a plan that is more expensive than the benchmark plan will have to pay the difference in cost. Conversely, if a person chooses a less expensive plan, such as the lowest-cost silver plan or a bronze plan, the tax credit will cover a greater share of that plan’s premium, and possibly even cover the entire cost, leaving the consumer with a zero-premium plan. When the tax credit exceeds the cost of a plan, it lowers the premium to zero and any remaining tax credit amount is unused.

For certain components of a Marketplace plan premium, the premium tax credit will not apply. First, the tax credit cannot be applied to the portion of a person’s premium attributable to covered benefits that are not essential health benefits (EHB). For example, a plan may offer adult dental benefits, which are not currently included in the definition of EHB. In that case, the person would have to pay the portion of the premium attributable to adult dental benefits without financial assistance. In addition, the ACA prohibits applying premium tax credits to the portion of premiums covering “non-Hyde” abortion benefits. Marketplace plans that cover abortion are required to charge a separate $1 monthly premium to cover the cost of this benefit; this means a consumer who is otherwise eligible for a fully subsidized, zero-premium policy would still need to pay $1 per month for a policy that covers abortion benefits. Finally, if the person smokes cigarettes and is charged a higher premium for smoking, the premium tax credit is not applied to the portion of the premium that is the tobacco surcharge.

How do people receive the premium tax credit?

To receive the premium tax credit, people must apply for coverage through the Marketplace and provide information about their age, address, household size, citizenship status, and estimated income for the coming year. After submitting the application, people will receive a determination letting them know the amount of premium tax credit for which they qualify. The consumer then has the option to have the tax credit paid in advance, claim it later when they file their tax return, or some combination of the two options.

The advanced premium tax credit (APTC) option allows consumers to have 1/12 of their tax credit paid directly to their Marketplace plan insurer each month, reducing the monthly amount the consumer owes. However, because the APTC eligibility determination is based on estimated income, the enrollee is required to reconcile their APTC at tax time the following year, once they know what their actual income was. For people receiving an advanced payment of the premium tax credit in 2025, the reconciliation would occur when they file their 2025 tax return in 2026. If the consumer overestimated their income when they applied, they can receive the unclaimed premium tax credit as a refundable tax credit when they file. If the consumer underestimated their income at the time of application and excess APTC was paid on their behalf during the year, they would have to repay some or all of the excess tax credit when they file. There are maximum repayment limits which vary depending on income, shown in Table 3.

Alternatively, people can opt to pay their entire premium costs each month and wait to receive their tax credit until they file their annual income tax return the following year, although most Marketplace participants cannot afford this option. The premium tax credit is refundable, meaning it is available to qualifying enrollees regardless of whether they otherwise owe any federal income tax. Everyone who receives an APTC in a tax year is required to file a tax return for that year in order to continue receiving financial assistance in the future. People who fail to file and reconcile for two consecutive years will be ineligible for premium tax credits the following year.

Cost Sharing Reduction

The second form of financial assistance available to Marketplace enrollees is a cost sharing reduction. Cost sharing reductions lower enrollees’ out-of-pocket cost due to deductibles, copayments, and coinsurance when they use covered health care services.

Who is eligible for the cost sharing reduction?

People eligible for premium tax credits and have household incomes between 100 to 250 percent of poverty are eligible for cost sharing reductions.

How are cost sharing reductions provided?

Unlike the premium tax credit (which can be applied toward any metal level of coverage), cost sharing reductions (CSR) are only offered through silver plans. For eligible individuals, cost sharing reductions are applied to a silver plan, essentially making deductibles and other cost sharing under that plan more similar to that under a gold or platinum plan. Individuals with income between 100 and 250 percent FPL can continue to apply their premium tax credit to any metal level plan, but they can only receive plans with reduced cost sharing if they pick a silver-level plan.

What amount of cost sharing reductions are available to people?

Cost sharing reductions are determined on a sliding scale based on income. The most generous cost sharing reductions are available for people with income between 100 and 150 percent FPL. For these enrollees, silver plans that otherwise typically have higher cost sharing are modified to be more similar to a platinum plan by substantially reducing the silver plan deductibles, copays, and other cost sharing. For example, in 2024, the average annual deductible under a silver plan was just over $5,000, while the average annual deductible under a platinum plan was $97. Silver plans with the most generous level of cost sharing reductions are sometimes called CSR 94 silver plans (with 94 percent actuarial value, which represents the average share of health spending paid by the health plan, compared to 70 percent actuarial value for a silver plan with no cost sharing reductions).

Somewhat less generous cost sharing reductions are available for people with incomes above 150 and up to 200 percent FPL. These reduce cost sharing under silver plans to 87 percent actuarial value (CSR 87 plans). In 2024, the average annual deductible under a CSR 87 silver plan was about $700.

For people with incomes above 200 and up to 250 percent FPL, cost sharing reductions are available to modestly reduce deductibles and copays to 73 percent actuarial value (sometimes called CSR 73 plans). In 2024, the average annual deductible under a CSR 73 silver plan was about $4,500.

Insurers have flexibility in how they set deductibles and copays to achieve actuarial value benchmarks set by the ACA for Marketplace plans, including CSR plans, so actual deductibles may vary from these averages.

The ACA also requires maximum annual out-of-pocket spending limits on cost sharing under Marketplace plans, with reduced limits for CSR plans. In 2025, the maximum OOP limit will be $9,200 ($18,400 family) for all QHPs with lower maximum OOP limits permitted under cost sharing reduction plans (Table 4).

This brief was updated on October 24, 2024 to incorporate updates to Medicare and Medicaid administrative data.

In 2021, 13 million people under age 65 received income from the Social Security disability programs, Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI), which provide monthly income to people who are unable to work on account of a disability. A less-commonly appreciated benefit of qualifying for Social Security disability programs is the connection to health insurance coverage through Medicare or Medicaid. In most states, SSI beneficiaries automatically qualify for and receive Medicaid coverage, while SSDI beneficiaries qualify for Medicare after receiving disability benefits for at least two years. Many who receive benefits from the SSDI and SSI programs also qualify for both Medicare and Medicaid, known as dual-eligible individuals.

This analysis examines enrollment in disability programs and characteristics of enrollees from 2002-2022 Social Security Administration data and related health coverage through the Medicare and Medicaid programs using data from the Centers for Medicare and Medicaid Services for 2021, the most recent year of data available. (See methods for details.) State-level data about the disability programs are also available on KFF’s State Health Facts.

Key Takeaways

• In 2021, 12.9 million people were eligible for Medicare or Medicaid because they received disability benefits from either SSDI or SSI. Of that total, 4.6 million, or more than one-third (35%), qualified for health coverage under both Medicare and Medicaid (dual-eligible individuals). Another 4.8 million SSI beneficiaries had Medicaid coverage only and 3.5 million SSDI beneficiaries had Medicare coverage only.
• A total of 13.0 million people under age 65, including working-age adults and children, received disability benefits in 2022, including 7.8 million people who received income from SSDI, 4.2 million who received income from SSI, and 1 million who received income from both programs.
• Enrollment of working-age adults in both the SSDI and SSI programs has decreased since 2014, reflecting the changing demographics of the U.S. population, the economy, and other factors that have reduced the number of new beneficiaries, including in more recent years, the lasting effects of Social Security office closures during the COVID-19 pandemic. The decline in SSDI enrollment has also meant a decline in the number of Medicare beneficiaries under age 65 who qualify due to disability.
• Mental disorders—which include intellectual and developmental disorders and other mental disorders—comprise the largest percentage of disabling conditions across both programs. In the SSDI program, musculoskeletal conditions are the most common disabling conditions among disabled beneficiaries (30%), followed by other mental disorders (16%) and intellectual/developmental disorders (14%). For SSI beneficiaries, intellectual and developmental disorders are the most common disabling conditions (33%), followed by other mental disorders (19%) and musculoskeletal disorders (12%).
• The average monthly benefit in 2022 was more than twice as large for disabled workers in the SSDI program (nearly $1,500 per month) than disabled beneficiaries in the SSI program (nearly $650 per month).

How many people under age 65 qualify for Medicaid and Medicare through the Social Security disability programs?

In 2021, 12.9 million people who received benefits through the Social Security disability programs qualified to receive coverage from Medicare, Medicaid, or both programs on account of their eligibility for disability benefits (Figure 1). While 61% of working age adults and nearly half of children had health coverage through an employer in 2022, employment-based coverage is much less common among people with disabilities, who are less likely to work. As a result, the Social Security disability programs – Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) (see Box 1) – play an important role in helping people with disabilities access health insurance coverage through the Medicaid or Medicare programs, with some people with disabilities qualifying for health coverage under both Medicare and Medicaid (known as dual-eligible individuals).

Of the 12.9 million people with disabilities who have coverage from Medicare, Medicaid, or both based on their eligibility for disability programs, a total of 4.6 million, or more than one-third (35%), are dual-eligible individuals. Overall, the overall group includes:

• 4.8 million SSI beneficiaries who have Medicaid only;
• 3.5 million SSDI beneficiaries who have Medicare only;
• 3.0 million SSDI beneficiaries who have both Medicare and Medicaid; and
• 1.6 million beneficiaries receiving both SSDI and SSI, who have both Medicare (through SSDI) and Medicaid (through SSI).

Although most people qualify for Medicare based on age when they turn 65, people under age 65 may become eligible for Medicare if they have received SSDI payments for 24 months. In 2021, 8.3 million people under the age of 65 were eligible for Medicare because of a disabling condition. Nearly all (8.1 million) were eligible through SSDI, and 0.2 million were eligible because they had End-Stage Renal Disease (ESRD) but did not receive SSDI. SSDI beneficiaries often must wait 5 months for SSDI payments after the onset of benefits, followed by a two-year waiting period between receipt of SSDI benefits and Medicare eligibility, referred to as the “Medicare waiting period.” It is unknown how many people are currently in the waiting period or what their health insurance coverage is during this period. Because of the length of the SSDI application process and the fact that SSDI eligibility is retroactive, applicants may complete some or all of the waiting period prior to receiving SSDI benefits, but many experience gaps in coverage during this time too. (Those under age 65 who qualify for Medicare based on having ESRD or Amyotrophic Lateral Sclerosis (ALS) do not have to wait 24 months for their Medicare benefits to start because they are not required to qualify for SSDI first.)

According to KFF analysis, although majorities of people with Medicare of all ages rate Medicare positively, people under age 65 with disabilities are less likely than older beneficiaries to give positive ratings to Medicare and some features of it, such as the quality and availability of providers. Medicare beneficiaries under age 65 with disabilities have also reported worse access to care, more cost concerns, and lower satisfaction with care than those age 65 or older. The lower ratings by people under 65 with disabilities may possibly be related to their different pathways to Medicare eligibility and because the program was originally designed to cover older adults, with coverage for younger people with disabilities added later. Also, because a larger share of people with Medicare under 65 with disabilities report that they are in fair or poor physical and mental health and have severe chronic conditions compared to people age 65 or older, those under 65 with disabilities may be more likely to have multiple encounters with the health care system during the year and encounter problems when they do.

States must generally provide Medicaid to people who receive SSI. In 2021, 6.5 million people were eligible for Medicaid through the SSI disability program. If states do not want to use the SSI eligibility criteria, they can use more restrictive rules so long as the rules are no more restrictive than what the state had in place in 1972 when the SSI program was established. There are currently 8 states using their own criteria, known as the 209(b) states: Connecticut, Hawaii, Illinois, Minnesota, Missouri, New Hampshire, North Dakota, and Virginia.

How many people under age 65 receive income from Social Security disability programs?

Among the 268 million people under age 65 in the U.S., 5% or 13 million people received income from SSDI, SSI, or both programs in 2022. More than half (60%, or 8 million) of Social Security disability program beneficiaries under 65 exclusively receive SSDI income, and nearly a third (32%, or 4 million) receive only SSI, while over 1 million people received benefits from both programs (Figure 2).

How has enrollment in the Social Security disability programs changed over time?

Enrollment of working-age adults in the Social Security disability programs increased from the early 2000s through 2014 but has been declining since (Figure 3). Enrollment of people under age 65 in SSDI and SSI has decreased from 14.9 million beneficiaries in 2014 to 13.0 million beneficiaries in 2022. Enrollment trends in the disability programs reflect the demographics of the U.S. population, the economy, and other factors. Program size depends in part on the size of the labor force, and some of the decreased participation in recent years reflects the baby boomers entering their retirement years. For the SSDI program, participation also requires people to meet past employment requirements and lower labor force participation means fewer people can meet those requirements. Research has also found lower application and award rates for “contingent workers,” which includes independent contractors, consultants, and those in temporary, on-call, and gig economy jobs, who make up an increasing share of the workforce. Lower SSDI enrollment over the past decade also likely reflects fewer applications stemming from the end of routinely-mailed social security statements in 2011.

More stringent disability determinations could also contribute to the lower enrollment. Between 1999 and 2019, the percentage of applicants who were approved to receive benefits (the “award rate”) declined for both disability programs: from 56% to 29% for SSDI and from 44% to 34% in 2021 for SSI. Lower award rates mean that even if a similar number of people apply, fewer people will enroll and receive benefits.

The decline in SSDI enrollment has meant fewer people under age 65 qualifying for Medicare due to having a long-term disability. The total number of Medicare beneficiaries under age 65 with disabilities (excluding those who qualify based on having end-stage renal disease) has declined since 2016, both in terms of the total number and the share of overall Medicare enrollment, based on Medicare enrollment data from the Centers for Medicare & Medicaid Services. In 2016, there were 8.6 million Medicare beneficiaries under age 65, or 16% of all beneficiaries, decreasing to 7.2 million in 2023, or 11% of the total.

The same trend is not observed in Medicaid because people have more options for qualifying for Medicaid than they do Medicare. Between 2014 and 2022, most states adopted Medicaid expansions under the Affordable Care Act, which provided another mechanism for adults under age 65 to qualify for Medicaid and spurred enrollment growth. Enrollment also grew between 2020 and 2023 because of the COVID-19 continuous enrollment period, a three-year period during which Medicaid eligibility disenrollments were paused.

Historically, economic downturns led to increases in SSDI and SSI enrollment, but notably, there was no enrollment surge during the economic downturn associated with the COVID-19 pandemic. In fact, the enrollment decline accelerated during the COVID-19 pandemic, when Social Security offices were closed for 2 years, likely further reducing the number of applicants. Office closures also contributed to a backlog of cases that is causing people to wait longer for eligibility decisions: Social Security data show that the average review time for initial applications increased from 4 months or less before the pandemic to nearly 8 months in 2023. Similar trends occurred for applications that were reconsidered after an initial denial.

The application for Social Security disability benefits can be a lengthy and complicated process, spanning months, if not years. A chart visualizing the steps to disability determinations in 2022 by the National Organization of Social Security Claimants’ Representatives shows that 62% of the 1.8 million applicants in 2022 were denied at the initial application, but that hundreds of thousands pursued reconsiderations and subsequent legal proceedings to establish eligibility. A 2022 study by the National Bureau of Economic Research found that legal representation did not affect the likelihood of a successful SSDI outcome but reduced the time it took for approval by nearly one year. The challenge with demonstrating eligibility is in proving that one has a disabling condition that makes substantive employment impossible.

The Biden-Harris Administration’s proposed FY 2025 budget includes a $1.3 billion (9%) increase to the Social Security Administration’s budget from FY 2023 to 2025 to improve customer service across field offices, disability determination, and teleservice, and reduce wait times. The Biden-Harris Administration also supports using the budget increase to advance equity and accessibility. The new funding would support simplifying the SSI application process, broadening access to Social Security programs especially for unserved populations, and preventing overpayments. The Social Security Administration would also use the funding to continue improving information technology systems to make accessing services and communication with staff easier both online and via phone.

What are the most common conditions that qualify people for Social Security disability benefits?

For both SSDI and SSI, musculoskeletal system diseases and mental disorders are the most common conditions that qualify people for disability benefits (Figure 4). Both Social Security disability programs use a strict definition of disability when assessing eligibility, which limits how many people with disabilities ultimately qualify for SSDI or SSI payments. The Social Security Administration defines disability for adults as the inability to engage in any “substantial gainful activity” because of one or more medically determinable physical or mental disabilities that are either expected to result in death or have lasted or are expected to last for a continuous period of at least 12 months. Substantial gainful activity describes a level of work that involves doing significant physical or mental activities or a combination of both. For children to qualify as disabled, they must be under 18 and have one or more physical or mental impairments which result in marked and severe functional limitations and the impairment must have lasted or be expected to last for at least 12 months or be expected to result in death.

Over the past two decades, musculoskeletal system diseases and mental disorders (including both intellectual and developmental disorders and other mental disorders) have accounted for the largest shares of disability determinations, and in 2022, these conditions combined account for 60% of disability determinations among SSDI beneficiaries and 64% among SSI beneficiaries. The most common conditions for SSDI beneficiaries are musculoskeletal system diseases, which include non-healing or complex fractures, abnormalities of major joints, and disorders of the spine. The most common conditions for SSI beneficiaries are intellectual/developmental disorders which include autism spectrum disorders and neurocognitive disorders. Other mental disorders include depressive, bipolar, and related conditions and schizophrenia spectrum and other psychotic disorders.

How much do Social Security disability program beneficiaries receive in monthly benefits?

SSDI beneficiaries receive average monthly benefits that are over twice as large as what SSI beneficiaries receive, with monthly SSDI payments for disabled workers averaging nearly $1,500 per month, compared with roughly $650 per month for people receiving SSI benefits (Figure 5). Family members of SSDI workers receive lower monthly benefits, on average: just under $900 for widowers and $1,000 for adult children. The monthly payment from SSDI is calculated using a statutory formula that accounts for people’s earnings and is designed to pay higher benefits to people with higher earnings but to replace a larger percentage of earnings for people with lower earnings. In 2022, SSDI benefits ranged from less than $600 to more than $3,000 each month. The maximum SSI benefit is set by Congress and in 2022 was $841 per month for an individual ($943 in 2024) and $1,261 for a couple ($1,415 in 2024). If people have non-SSI income, their SSI benefits are reduced by the amount of countable income.

Many beneficiaries are now facing benefit reductions on account of prior overpayments by the Social Security Administration, as reported by KFF Health News, but the Biden-Harris Administration is taking steps to limit the effects of benefit reductions. Each year, more than 2 million beneficiaries have been receiving notices that their disability benefits were overpaid and are being asked to repay the specific amounts within 30 days or have their monthly disability benefits reduced. In many cases, those payments had been made years earlier without the recipients’ knowledge. There have been overpayments in both programs, but they are more common in SSI because SSI eligibility and payment amounts change when recipients experience changes in income and assets.

From April through June 2024, new overpayment policies went into effect to address those benefit reductions, including:

• Limiting the amount that can be withheld from a recipient’s monthly disability benefits (to adjust for overpayments) to no more than 10% of the recipient’s monthly benefits for SSI recipients and either 10% or $10 for SSDI recipients (whichever is greater), rather than withholding the entire amount,
• Increasing the amount of time for recipients to repay the overpayment,
• Making overpayment notices easier to understand,
• Simplifying the waiver application for beneficiaries who meet repayment exemption criteria, and
• Holding the Social Security Administration responsible for providing proof of overpayment rather than the beneficiary.