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

Key Findings

• The latest KFF COVID-19 Monitor finds that fatigue and frustration dominate the public’s mood as the U.S. nears the pandemic’s two-year anniversary. While partisans have often been split in their pandemic attitudes, roughly three in four Democrats, independents, and Republicans say they feel “tired” and “frustrated,” and similar shares say they think it is likely that most people in the U.S. will eventually get infected with COVID-19. Partisans do divide, however, on whether the pandemic is the most important issue facing the country, with about half of Democrats choosing COVID-19 as the most important among 6 different issues and a similar share of Republicans choosing inflation as the top issue.
• The public overall says that compared to previous waves of the virus, they are now “more worried” about the impact of the omicron surge on the U.S. economy and on their local hospitals, but “less worried” about the impact in their own personal lives. Notably, however, Black and Hispanic adults and those with lower incomes report higher levels of worry than their counterparts when it comes to missing work due to COVID-19 or becoming seriously ill or hospitalized, reflecting the increased burden the pandemic has placed on people of color over the past two years.
• While many vaccinated people have become infected with the omicron variant, a majority of the public (62%) continue to see the fact that most vaccinated people who get COVID-19 do not require hospitalization as a sign that the vaccines are working. However, the share who see breakthrough infections as a sign that the vaccines are not working has increased slightly since September (from 26% to 34%).
• After holding relatively steady for several months, vaccine uptake inched up in January, with 77% now saying they have received at least one dose of a COVID-19 vaccine (up from 73% in November 2021). This movement seems to have come from a chipping away at the shares who say they will get vaccinated right away, will “wait and see” or will get vaccinated only if required. The share saying they will “definitely not” get vaccinated currently stands at 14% and has not moved in a statistically significant way since December 2020.
• With the CDC now recommending that all eligible adults get a COVID-19 booster shot, we find that about four in ten (42%) of all adults say they have received a booster dose, a third (34%) have received at least one vaccine dose but are not boosted, and 22% remain unvaccinated. Among the population likely to be booster-eligible (those who either received a booster or completed a full initial course of vaccination 6 months ago or longer), seven in ten have gotten a booster.
• Gaps in booster uptake are mirroring early gaps in initial vaccination uptake, with adults 65 and older (66%) and Democrats (62%) among the most likely to have received a booster and Black and Hispanic adults lagging behind White adults in booster uptake (31%, 37%, and 46%, respectively). Among those who are vaccinated but not boosted, four in ten (39%) say they want to get a booster as soon as they can, however a similar share say they will either definitely not get a booster (19%) or only do so if required (22%).
• Nearly one-quarter of adults (23%) now say they’ve tested positive for COVID-19 at some point, including 8% who say they’ve tested positive in the past month. Among those who tested positive in the past month, 16% say their positive result was on an in-home test only, which is unlikely to be recorded in official COVID-19 case counts. Difficulty accessing COVID-19 tests is likely further contributing to an undercount of cases.
• Amid the omicron surge, about six in ten of those who tried to purchase an at-home COVID-19 test say the tests were difficult to find, and one-third (35%) of those who tried to find an in-person test similarly report difficulty. Overall, nearly a quarter (23%) of all adults say they tried to find either type of test and faced difficulty. More broadly, about half of adults say there are not enough COVID-19 tests available in their local area for those who want them. In addition, while about eight in ten are confident the results of COVID-19 tests at a medical facility or testing site are usually accurate, just over half (54%) are similarly confident in the accuracy of home tests.
• About half of adults say the FDA deserves at least a fair amount of blame for the limited availability of tests, while about four in ten assign blame to each President Joe Biden and the test manufacturers. President Biden announced on January 14^th that Americans could order free at-home tests beginning on January 19^th, while the survey was still in the field.
• Around one in five adults (19%) report they’ve personally had difficulty in the past three months figuring out whether they needed to isolate or limit their normal activities due to a COVID-19 exposure, positive test, or symptoms. This is even higher among those who say they tested positive for COVID-19 in the last month (38%) and those who reported difficulty finding a COVID-19 test (37%).

Mood Of The Country

Nearly two years into the COVID-19 pandemic, the public’s mood is dominated by fatigue and frustration. About three in four adults including majorities across age, gender, race and ethnicity, and income groups say that “tired” and “frustrated” describe how they feel about the current state of the pandemic in the U.S., while about four in ten each say they are “optimistic” or “angry” and three in ten say they feel “confused.”

While previous KFF research has shown that most attitudes toward COVID-19 tend to diverge along partisan lines, “tired” and “frustrated” are the dominant emotions expressed across partisans, with at least seven in ten Democrats, independents, and Republicans saying each word describes how they feel about the current status of the pandemic.

Despite feeling fatigued about the current state of the pandemic, about a third of adults (34%) continue to see the pandemic as the biggest problem facing the country right now, ranking slightly ahead of rising prices due to inflation (28%). About one in ten say climate change (9%) and racial inequality (8%) are the biggest problems facing the country, while 6% choose crime and 5% choose product shortages due to supply chain issues as the country’s biggest problems. Partisans have differing views as a half of Democrats (51%) say the pandemic is the biggest problem, while a similar share of Republicans (44%) cite inflation. Among independents, about equal shares say the pandemic (28%) and inflation (30%) are the biggest problem facing the United States right now.

Along with feelings of fatigue and frustration, the public overall seems resigned to the idea that COVID-19 infection is inevitable for most people. Three in four adults (77%) think that most people in the U.S. will eventually get COVID-19, including majorities across gender, age, income, and racial and ethnic groups. Similar shares across partisanship and vaccine status also say this is inevitable.

In addition, six in ten (62%) of those who have never tested positive for COVID-19 think it is “very likely” or “somewhat likely” they will become infected in the next year, including two-thirds of those who are vaccinated and 45% of those who are unvaccinated and also have never tested positive.

Impact Of Omicron

Omicron’s Impact On Worries

With the omicron variant of COVID-19 spreading across the country, about four in ten adults (42%) say they are “very” or “somewhat” worried that they will become infected with the new variant. The share who are worried about the virus’ impact is somewhat lower, with about a third saying they are worried they will become seriously sick from coronavirus (34%) or will have to miss work due to a coronavirus infection (36%). About a quarter (27%) say they are worried they will be hospitalized for COVID-19. Each of these worries are more prevalent among adults with lower incomes and people of color. For example, Hispanic adults (57%) and Black adults (43%) are much more likely than White adults (27%) to say they are worried about having to miss work due to a coronavirus infection, as are those with incomes under $40,000 compared to those with higher incomes (46% vs. 31%). Hispanic and Black adults are also more likely than White adults to say they are worried about becoming infected with omicron, becoming seriously ill, or being hospitalized due to coronavirus, as are lower-income adults compared to their higher-income counterparts.

Similar to previous KFF Vaccine Monitor findings, vaccinated adults are also more likely than those who are unvaccinated to say they are worried about getting infected with, getting seriously sick from, or being hospitalized due to coronavirus. At least three in ten vaccinated and unvaccinated adults are worried about having to miss work due to a coronavirus infection.

While many adults, and particularly people of color, are worried about the personal impacts of omicron, the public overall says omicron has made them more worried about the pandemic’s impact on the economy, their local hospitals, and people who are unvaccinated. Majorities say that compared to previous surges of the pandemic, they are now more worried about the impact of omicron on the U.S. economy (56%) and on their local hospitals (54%). Half of adults also say they are more worried about omicron’s impact on people who are not vaccinated, however this largely reflects the vaccinated population’s worry about the unvaccinated. Among unvaccinated adults themselves, just 15% say they are more worried about omicron’s impact, compared to 61% of vaccinated adults who are worried about the impact on the unvaccinated.

When it comes to personal impact, the public reports being less worried about omicron than they were about previous waves of the pandemic. Majorities say that compared to previous surges, they are less worried about the impact of omicron on themselves personally (69%) and on their way of life (58%). An even larger share of unvaccinated adults say they are less worried about the impact of omicron on themselves personally (76% of unvaccinated adults, compared to 67% vaccinated) and their way of life (66% of unvaccinated adults, 55% vaccinated).

About seven in ten adults (71%) say they are “very” or “somewhat” worried that restrictions aimed at stopping the spread of omicron will hurt local businesses in their area and similar shares (68% each) say they are worried that their local hospitals will be overwhelmed with COVID-19 patients or that other new and more serious variants will spread in the United States. While majorities across partisans express worry about the impact of restrictions on local businesses, Democrats are much more likely than Republicans to worry that their local hospitals will be overwhelmed (86% vs. 50%) or that new variants will develop and spread in the U.S. (86% vs. 48%).

Despite widespread reports of vaccinated individuals becoming infected with the omicron variant, most adults (62%) say “the fact that most vaccinated people who become infected with COVID-19 do not require hospitalization means that the vaccines are working” while about a third (34%) say “the fact that some vaccinated people are becoming infected with COVID-19 means that the vaccines are not working.” Notably, the share who see breakthrough infections as a sign that the vaccines are not working has increased slightly since September (from 26% to 34%), mainly driven by an increase among Republicans (from 39% to 50%) and unvaccinated adults (from 66% to 84%).

Omicron’s Impact On Behaviors

When asked about the impact of omicron on their own behaviors, 43% of adults say the spread of the new variant has made them more likely to wear a mask and nearly as many (38%) say it has made them more likely to avoid large gatherings. Reflecting their higher levels of worry about becoming infected with omicron, Black and Hispanic adults are more likely than White adults to say the new variant has prompted them to change their behavior, as are vaccinated adults compared to unvaccinated adults and Democrats compared to Republicans.

Trend data also reveals that self-reported mask usage has increased among the public since last summer. A majority of adults (57%) now say they wear a mask every time when they are in a grocery store, a 20-percentage point increase since July 2021. About half of the public say they wear masks every time at work (47%) or on public transportation (49%), up from about a third in July. While a majority of adults (54%) say they were a mask every time they are in an indoor crowded place, fewer (33%) report consistent mask usage in crowded outdoor spaces. Overall, Black and Hispanic adults are more likely than White adults to report consistent mask usage, as are vaccinated adults compared to those who are not vaccinated. Across partisans, Democrats are roughly two to three times as likely as Republicans to say they wear a mask every time in each of the situations presented.

Trends In COVID-19 Vaccination Intentions And Uptake

After holding relatively steady for several months, COVID-19 vaccine uptake inched up between November 2021 and January 2022. More than three-quarters of adults (77%) now report that they have received at least one dose of a COVID-19 vaccine, up from 73% in November. One percent say they plan to get vaccinated as soon as possible, 4% say they want to “wait and see” before getting a vaccine, and 3% say they will get vaccinated only if they are required for work, school, or other activities. One in eight adults (14%) say they will “definitely not” get vaccinated for COVID-19, a share that has held generally constant since December 2020.

The spread of omicron in the U.S. does not appear likely to motivate more unvaccinated adults to get the COVID-19 vaccine. Three in four unvaccinated adults (76%) say that news of the omicron variant spreading has not made much of a difference as to whether they will get the vaccine while just 8% said it has made the more likely to get vaccinated and 15% say it has made them less likely to do so.

Looking at demographic patterns of COVID-19 vaccine uptake, we continue to find that Democrats, college graduates, older adults, and those living in urban areas report being vaccinated at higher rates than Republicans, those without college degrees, younger adults, and rural residents.

The age gap in vaccine uptake appears to be shrinking somewhat with 73% of 18-29 year-olds and 72% of 30-49 year-olds now saying they are vaccinated, compared to about two-thirds in November. In addition, the shares of Republicans (63%) and independents (76%) who report being vaccinated reached new highs this month, though still lagging significantly behind the vaccination rate among Democrats (91%). Notably, a quarter of Republicans (26%) continue to say they will “definitely not” get vaccinated, a share that has held relatively steady since December 2020.

Vaccine Booster Uptake And Intentions

A recent study released by the Centers for Disease Control and Prevention (CDC) found that a booster dose was effective in preventing hospitalization due to COVID-19 and the CDC announced earlier this month that a booster dose will be required for adults to be considered “up-to-date” on their COVID-19 vaccinations. We find that among adults overall, about four in ten (42%) have received a booster dose, while 34% have received at least one vaccine dose but are not boosted and 22% remain unvaccinated.

Mirroring their earlier uptake of the initial vaccine doses, Democrats (62%) are more likely than independents (37%) and Republicans (32%) to have received a booster. Similarly, two-thirds of adults 65 and older and half of adults ages 50-64 have received a booster, compared to three in ten adults ages 30-49 (31%) and a quarter of those ages 18-29 (24%) who say the same.

Notably, across racial and ethnic groups, White adults (46%) are more likely than Black (31%) and Hispanic (37%) adults to say they have received a booster dose of the vaccine, while larger shares of Black and Hispanic adults are vaccinated but not boosted (49% and 39% respectively, compared to 29% of White adults). This may at least partially reflect some Black and Hispanic adults not yet being eligible for a booster if their initial course of vaccination was completed more recently, since access issues and other concerns delayed initial vaccine uptake for some people.

Among vaccinated adults who are likely eligible for a booster dose (those who either got a booster or completed an initial full course of vaccine at least six months ago), seven in ten have gotten a booster. This rises to 86% among those ages 65 and over and 77% among those ages 50-64 who are likely booster-eligible.

However, there is evidence that booster uptake and access may be lagging among the booster-eligible population of Black adults. Among the likely booster-eligible population, 57% of Black adults compared with 69% of Hispanic adults and 72% of White adults have gotten a booster.

The racial and ethnic gap in booster uptake does not appear to be driven by a lack of desire among Black and Hispanic adults to get boosted. Among those who are vaccinated but not yet boosted, four in ten (39%) say they want to get a booster dose as soon as they can, including 41% of Black adults and nearly half of Hispanic adults (47%).

On the other hand, resistance to getting a booster does appear to be a factor in the partisan gap in booster uptake. A majority (58%) of Democrats who are vaccinated but not yet boosted say they want to get a booster dose as soon as they can, compared to just 18% of Republicans who have not yet gotten a booster. Indeed, about half (53%) of vaccinated but not yet boosted Republicans say they will either “definitely not” get a booster (23%) or will only do so if they are required (30%).

Most vaccinated but not boosted adults (60%) say news of the omicron variant spreading has not made much of a difference as to whether they will get a booster. However, about three in ten (29%) say the spread of omicron has made them more likely to get a booster shot, a share that rises to 41% among Hispanics who are vaccinated but not boosted.

When asked to say in their own words the main reason they have not gotten a booster dose, about one in eight vaccinated but not boosted adults offer that they feel that their initial vaccination doses are enough or that they don’t need it (13%) and a similar share say they are currently not eligible for a booster (12%). Other common reasons provided include doubts about the efficacy of boosters, including those who cite the fact that vaccinated people are still getting sick (9%), being too busy or not having time to get a booster (8%), having already gotten COVID-19 (7%), work-related concerns such as having to miss work to get the shot or recover from side effects (5%), medical issues (5%), procrastination (5%) and wanting to wait and see how boosters are working (5%).

Among those who are more open to getting a booster (those who say they want to get a booster dose as soon as possible or wait and see), the most common reasons given for not getting a booster are that they aren’t eligible (17%), are too busy (12%), already had COVID-19 (8%), or haven’t gotten around to it or have been putting it off (8%). Those who are more reluctant (saying they will get a booster only if required or will definitely not get one) cite different reasons for not getting boosted, with the top answers being that they feel they don’t need a booster or feel the initial vaccination is enough (22%), or that they question the boosters’ effectiveness (19%).

Across racial and ethnic groups, one in five Hispanic adults who are vaccinated but not boosted (21%) cite lack of eligibility as the main reason they have not gotten a booster dose, as do 13% of Black adults and 10% of White adults. Notably, about one in ten vaccinated but not boosted Black and Hispanic adults said they have been too busy or haven’t had time to get a booster dose of the vaccine.

The spread of the omicron variant has led some disease experts to call for COVID-19 vaccine mandates for air travel. Overall, most of the public think that COVID-19 vaccination should be required for international air travel (62%) and for domestic air travel (55%) and about half think there should be a vaccination requirement for train travel within the U.S. (51%). Unsurprisingly, there are large partisan differences on whether to institute vaccination requirements for travel. More than three in four Democrats think there should be a vaccine requirement for air travel and train travel, whereas about four in ten Republicans (39%) think a requirement should be in place for international travel, and about one in four think a requirement should be in place for domestic travel by air (28%) or train (25%).

COVID-19 Testing

How Many Adults Have Personally Tested Positive For COVID-19?

Almost a quarter of adults now say they have personally tested positive for COVID-19 at some point (23%), while another 12% say someone in their household has tested positive and 49% say someone else they know has. Around a third of unvaccinated adults say they have tested positive at some point (34%), significantly higher than the share among vaccinated adults (21%).

Notably, while unvaccinated adults are more likely than those who are vaccinated to say they tested positive for COVID-19 at some point, similar shares of vaccinated and unvaccinated adults say they tested positive within the past month amid the omicron surge (7% and 10%, respectively).

Amid concerns that official COVID-19 case counts may be an underestimate if many people are taking at-home tests that are not recorded by government agencies, about eight in ten of those who say they tested positive in the past month say they received a positive result on an in-person test (66%) or on both an in-person and at-home test (17%).

One in six (16%) adults who received a positive test result in the past month (representing about 1% of all U.S. adults) say that result came on an at-home test only. With few states or localities offering residents a way to report their at-home tests, these results are unlikely to be included in official case counts.

Experiences With Testing Access

With COVID-19 cases surging to unprecedented levels over the past two months, many U.S. adults report difficulty accessing both at-home and in-person COVID-19 tests.

While many made an effort to find testing for COVID-19, some – depending on what type of test they sought – struggled with the task. A majority (65%) of adults who tried to get an in-person COVID-19 test in the past month say it was easy, though a substantial share, 35%, say it was difficult. At-home tests presented even more of a challenge, with 62% of those who tried to find an at-home test reporting it was difficult and 38% saying it was easy.

Overall, 23% of all adults say that they tried to get either an in-person or at-home test in the past month and had difficulty finding one, 24% tried and didn’t have any difficulty, and 52% didn’t try to access either type of test. Suburban (27%) and urban (24%) residents are more likely than rural residents (12%) to report difficulties finding tests in the past month. As well, higher shares of young adults (33% of those ages 18-29) and adults with high incomes (32% of those with a household income of $90K or more a year) reported difficulties finding tests. These differences are largely a reflection of the higher shares of these groups who said they attempted to purchase at-home tests, which were often in short supply.

The vast majority (89%) of those who attempted to get an in-person COVID-19 test in the past month say they were able to get one, including 58% who say they got a test on the first day they wanted one. However, 11% of those who tried to get such a test (4% of all adults) say they were unable to get an in-person test, and 23% (7% of all adults) say they had to wait 2 days or more to be tested. Combined with the longer wait time for the results of in-person tests, this could result in delays in returning to work or other activities for people who were exposed or experiencing symptoms of COVID-19.

Among those who tried to get an at-home test, one-third (33%, or 9% of all adults) say they were unable to get one, mainly because tests were not available rather than being too expensive (91% vs. 2% among those who tried but could not get an at-home test).

Perceptions Of Test Access In Local Areas

Beyond their personal experiences, about half of adults (48%) feel that there are not enough COVID-19 tests available in their local area for people who want them, while 45% believe there are enough tests. Residents of rural areas are more likely to think there are enough tests in their area (53%) compared to suburban residents (42%). President Biden announced on January 14^th that Americans could order at-free home tests beginning on January 19^th, while the survey was still in the field.

Adults with higher incomes and those in urban and suburban areas are more likely to feel that the testing supply isn’t adequate, which may reflect the fact that they were more likely to say they have sought out at-home tests, which many people reported difficulty finding.

Despite reported difficulty accessing tests, most adults are confident they would be able to access COVID-19 testing if needed. About eight in ten adults overall say they are confident that they would have access to COVID-19 testing if they were exposed to the virus (81%), with about half saying they are very confident (51%).

Who Does The Public Blame For Issues With Testing?

When asked who is responsible for the limited availability of COVID-19 tests in the U.S., around half of adults (49%) say that the FDA deserves a lot or a fair amount of blame for the limited availability of COVID-19 tests in the United States. Slightly fewer think President Joe Biden deserves a fair amount or a lot of blame (44%) with a similar number who say the same about the COVID-19 test manufacturers (41%). However, more adults say that Biden deserves a lot of blame (26%), compared to the FDA (19%) and test manufacturers (16%).

Republicans and unvaccinated adults are more likely than Democrats and vaccinated adults to place at least a fair amount of blame for test shortages on President Biden and on the FDA. Three in four Republicans (75%) and more than four in ten independents (44%) say President Biden deserves a lot or a fair amount of blame for the limited availability of COVID-19 tests, compared to one in five Democrats (21%) who say the same. Similarly, Republicans are more likely than Democrats to say the FDA deserves a lot or a fair amount of blame (62% vs. 39%).

Confidence In Accuracy Of Testing

In addition to difficulty accessing at-home tests, many adults lack confidence in their accuracy. While a large majority are very (43%) or somewhat (39%) confident that the results of in-person COVID-19 tests at a medical facility or testing site are usually accurate, far fewer are very (11%) or somewhat (44%) confident in the accuracy of at-home tests.

Views Of CDC Guidance Following Testing Or Exposure

Even after testing positive or being exposed to COVID-19, many still are not sure what they are supposed to do. Around one in five adults (19%) report they have personally had difficulty in the past three months figuring out whether they needed to isolate or limit their normal activities due to a COVID-19 exposure, positive test, or symptoms they were experiencing. Adults under 65 (22%) are more likely than those 65 and older (8%) to say they have had difficulty figuring out whether they needed to isolate or limit their normal activities; among 18-29 year-olds more than one in four (27%) report difficulty making personal decisions around COVID. Notably, 38% of those who say they tested positive for COVID-19 in the last month say they had difficulty deciding whether they needed to isolate, as did 37% of those who reported difficulty finding a COVID-19 test.

In late December, the CDC shortened the recommended isolation time for people who test positive for COVID-19 from 10 days to 5 days, followed by another five days of wearing a mask. Some individuals and organizations, including the American Medical Association, questioned the wisdom of the updated guidelines and whether they would be confusing for people to follow. In addition, some states and localities, including Washington, DC, have continued to advise residents to observe a 10-day isolation period. Our findings suggest that the change has indeed been confusing for the public, with around six in ten adults (58%) saying the CDC guidelines for testing and isolation for those exposed or infected with COVID-19 are confusing, while 39% think the guidelines are clear.

This KFF COVID-19 Vaccine Monitor was designed and analyzed by public opinion researchers at the Kaiser Family Foundation (KFF). The survey was conducted January 11-23, 2022, among a nationally representative random digit dial telephone sample of 1,536 adults ages 18 and older (including interviews from 327 Hispanic adults and 303 non-Hispanic Black adults), living in the United States, including Alaska and Hawaii (note: persons without a telephone could not be included in the random selection process). Phone numbers used for this study were randomly generated from cell phone and landline sampling frames, with an overlapping frame design, and disproportionate stratification aimed at reaching Hispanic and non-Hispanic Black respondents as well as those living in areas with high rates of COVID-19 vaccine hesitancy. Stratification was based on incidence of the race/ethnicity subgroups and vaccine hesitancy within each frame. High hesitancy was defined as living in the top 25% of counties as far as the share of the population not intending to get vaccinated based on the U.S. Census Bureau’s Household Pulse Survey.  The sample also included 98 respondents reached by calling back respondents that had previously completed an interview on the KFF Tracking poll six months ago or more. Another 82 interviews were completed with respondents who had previously completed an interview on the SSRS Omnibus poll (and other RDD polls) and identified as Hispanic (n=33; including 12 in Spanish) or non-Hispanic Black (n=49). Computer-assisted telephone interviews conducted by landline (165) and cell phone (1,371; including 1,070 who had no landline telephone) were carried out in English and Spanish by SSRS of Glen Mills, PA. To efficiently obtain a sample of lower-income and non-White respondents, the sample also included an oversample of prepaid (pay-as-you-go) telephone numbers (25% of the cell phone sample consisted of prepaid numbers) Both the random digit dial landline and cell phone samples were provided by Marketing Systems Group (MSG). For the landline sample, respondents were selected by asking for the youngest adult male or female currently at home based on a random rotation. If no one of that gender was available, interviewers asked to speak with the youngest adult of the opposite gender. For the cell phone sample, interviews were conducted with the adult who answered the phone. KFF paid for all costs associated with the survey.

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

The margin of sampling error including the design effect for the full sample is plus or minus 3 percentage points. Numbers of respondents and margins of sampling error for key subgroups are shown in the table below. For results based on other subgroups, the margin of sampling error may be higher. Sample sizes and margins of sampling error for other subgroups are available by request. Sampling error is only one of many potential sources of error and there may be other unmeasured error in this or any other public opinion poll. Kaiser Family Foundation public opinion and survey research is a charter member of the Transparency Initiative of the American Association for Public Opinion Research.

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

The Build Back Better Act (BBBA), the budget reconciliation package that passed the House in November 2021 and is currently being considered by the Senate, includes a range of health and other proposals supported by President Biden, including a proposal to allow the federal government to negotiate the price of some prescription drugs covered under Medicare Part B (administered by physicians) and Medicare Part D (retail outpatient drugs). The negotiation proposal in the BBBA would apply to a limited number of drugs or biologics, as well as all insulin products. The negotiated prices for the first set of selected drugs covered under Part D would take effect in 2025. For drugs covered under Part B, the earliest negotiated prices could first take effect is 2027.

Compared to previous legislation passed by the House in 2019, the BBBA scales back the number of drugs that could be eligible for negotiation and also includes specific criteria for excluding drugs from the negotiation process. In additional to negotiating the price of all insulin products starting in 2025, the BBBA allows price negotiation for no more than 10 Part D drugs in 2025, 15 Part D drugs in 2026, 15 Part D and Part B drugs in 2027, and 20 Part D and Part B drugs in 2028 and later years. In contrast, the earlier proposal would have allowed the government to negotiate drug prices for up to 250 single-source Part B and Part D plus all insulin products. Both legislative proposals would negotiate prices only for those drugs lacking generic or biosimilar competitors. The BBBA also exempts drugs from the negotiation process if they are within several years of their FDA approval date – 9 years for small-molecule drugs and 13 years for biologics – an exemption not included in the earlier proposal.

This brief illustrates the potential scope of the drug price negotiation proposal in the BBBA. In the first part of our analysis, we show the 20 drugs covered under Medicare Part B and Part D that, along with all insulin products, would be subject to negotiation under the BBBA if the proposal was fully implemented this year (rather than in 2028). This analysis is designed to highlight the types of Medicare-covered drugs that could be subject to negotiation. Because the actual implementation date is 2025 (for Part D drugs) and 2027 (for Part B drugs), the list of Part B and Part D drugs that would be subject to negotiation if the BBBA was enacted would likely be different than what our analysis shows, since it would be based on future spending and market dynamics (in particular, the introduction of generic equivalents).

In the second part of our analysis, we show which of the current top-spending drugs covered by Part B and Part D could be subject to price negotiation, and in what years, starting in 2025 (Part D) and 2027 (Part B) when the BBBA proposal would take effect, assuming no generic or biosimilar entry in the intervening years. We also highlight which of the current top-spending drugs would not be subject to negotiation at any point due the BBBA provision that excludes drugs with generic or biosimilar equivalents from the negotiation process.

To derive our list of 20 negotiated drugs, we followed the selection process specified in the BBBA. Drugs were selected for negotiation if they ranked among the top 20 drugs in a combined ordering of Part B and Part D drugs based on Medicare drug spending data for 2019 (the most current publicly available data), ranked by total gross spending for drugs and biological products without generic or biosimilar equivalents, after eliminating products exempt from negotiation based on criteria specified in the BBBA. The gross spending amount used to determine top-spending Part D drugs under the BBBA includes Medicare spending and beneficiary liability but does not exclude the value of rebates. (See Methods for additional details on our analysis.)

Findings

If the drug price negotiation proposal in the BBBA was fully implemented in 2022, the 20 negotiated drugs based on total gross spending would include 18 Part D drugs and 2 Part B drugs, in addition to 42 insulin products. These drugs were used by 8.5 million Medicare beneficiaries in 2019.

• Total gross spending on the 20 Part B and Part D negotiated drugs in our simulation in 2019 ranged from a high of $4.0 billion for Xarelto, a Part D drug used to treat blood clots, down to $0.5 billion for Combivent Respimat, a Part D drug for chronic obstructive pulmonary disease (Table 1). The number of beneficiaries who used these 20 drugs in 2019 ranged from a high of 1.1 million Part D enrollees using Xarelto down to 1,600 Part B enrollees using Soliris, an immunosuppressive drug.
• In total, 3.2 million Medicare beneficiaries enrolled in Part D used one of the 42 insulin products covered under Part D in 2019 that would be subject to price negotiation, including 1.7 million beneficiaries who did not receive low-income subsidies (Table 2). In addition to the potential for cost savings attributable to lower negotiated prices, Part D enrollees who do not receive low-income subsidies may see lower out-of-pocket costs for insulin products based on the BBBA proposal requiring Part D plans to charge no more than a $35 monthly copayment or 25% of the negotiated price for insulin.
• Taken altogether, a total of 8.5 million Medicare beneficiaries in 2019 used one or more of the 20 drugs that would be subjection to negotiation based on their gross spending amount and the 42 insulin products that would also be subject to negotiation, accounting for nearly one in five (18%) of the 47.7 million Medicare Part D enrollees in 2019. This total includes 4.8 million beneficiaries who did not receive low-income subsidies, accounting for 14.4% of the 33.7 million Part D enrollees not receiving low-income subsidies in 2019.

Of the top 20 Part B drugs and top 20 Part D drugs with the highest total Medicare spending in 2019, negotiated prices could be available for nearly half of these drugs starting in 2025 for Part D drugs or 2027 for Part B drugs if no generics or biosimilars come to market and they remain among the top spending drugs.

• Among the top 20 Part D drugs ranked by total gross spending in 2019, 11 drugs would meet the criteria for negotiated prices beginning in 2025 and 1 would meet the criteria in 2028 if no generics or biosimilars come to market and they remain among the top Part D drugs by total spending (Table 3). (Note, however, that the BBBA only allows negotiated prices for up to 10 Part D drugs in 2025.) However, 8 of the top 20 Part D drugs would not qualify for negotiation at any time because they are a reference product for a generic or biosimilar. This includes several drugs with relatively high average out-of-pocket spending by Part D enrollees, such as Revlimid, Imbruvica, and Humira.
• Among the top 20 Part B drugs ranked by total spending in 2019, 7 drugs could be eligible for negotiated prices in 2027 and 6 could be eligible between 2028 and 2031 if no generics or biosimilars come to market, they remain among the top Part B drugs by total spending, and they rank high enough in a combined ranking of Part B and D drugs (Table 4). However, 7 drugs would not qualify for negotiation at any time because they are a reference product for a generic or biosimilar, including Part B drugs with relatively high average beneficiary liability, such as Rituxan, Alimta, and Herceptin.

Discussion

This analysis shows the potential reach of the BBBA drug price negotiation proposal, under the scenario that negotiated prices for 20 Part B and Part D drugs were to take effect in 2022, rather than in 2028. We find that most drugs selected for negotiation in our simulation would be Part D drugs, not Part B drugs. This is not unexpected since most Medicare-covered drugs are covered under Part D, rather than Part B. We also find that nearly 1 in 5 Part D enrollees in 2019 used one of the 20 negotiated drugs or 42 insulin products in our analysis. In addition, we find that more than half of the 20 Part B drugs and 20 Part D drugs with the highest gross total spending in 2019 would meet the criteria for negotiation between 2025 and 2028 (for Part D) or between 2027 and 2031 (for Part B) if no generics or biosimilars come to market. At the same time, many of the top-spending drugs covered under Medicare currently have generic or biosimilar equivalents, and therefore are not eligible for negotiation under the BBBA criteria.

Overall, our analysis suggests that the negotiation proposal in the Build Back Better Act could help to lower drug prices for some of the top-spending drugs covered under Medicare Part B and Part D, but some of the drugs with the highest total Medicare spending currently would be exempt from the negotiation process. These selection and exclusion criteria help to explain why the Congressional Budget Office estimated significantly lower 10-year federal savings from the drug price negotiation proposal in the BBBA (~$80 billion) compared to earlier legislation (~$450 billion).

For this analysis, we simulated the process of selecting negotiation eligible drugs under the approach proposed in the Build Back Better Act (BBBA), using 2020 as the first year of selecting products for negotiation. Using the same two-year timeframe as the negotiation process in the BBBA, drugs selected for negotiation in 2020 would have their negotiated price available in 2022. We determine whether any of those drugs would be eligible for the negotiation process based on the approval date, orphan drug status and indications, whether the total expenditure exceeds the $200 million expenditure floor, and status as a reference product for a biosimilar/generic.

For top-spending Part B and Part D drugs, negotiation eligible drugs would be a selected drug in 2020 based on the following criteria:

• for biologics, approved/licensed prior to 2009 (since that is at least 11 years from a hypothetical February 1, 2020 selected drug publication date, assuming implementation in 2022 for this analysis)
• for small-molecule drugs, approved/licensed prior to 2013 (since that is at least 7 years from a hypothetical Feb 1, 2020 selected drug publication date, assuming implementation in 2022 for this analysis)
• does not have an approved generic/biosimilar
• is not designated as an orphan drug; has approved orphan drug designations for more than one rare disease/condition; or is past the orphan exclusivity period
• above $200 million in total Part B drug spending and total Part D spending combined
• is not derived from human whole blood or plasma

For drugs with multiple formulations and/or dosage amounts we combine the drugs into one and use the same criteria. We use the earliest, non-discontinued FDA approval date among the combined drugs and consider them to have a generic/biosimilar or orphan exclusivity if any one does. The BBBA provides some latitude to the Secretary of Health and Human Services for handling drugs with multiple formulations and/or dosage amounts which may result in differences with our methodology during a negotiation selection process.

To calculate the spending and count of beneficiaries for a drug, we used 2019 claims data for Part B drugs and 2019 prescription drug event data for Part D drugs from a 20% sample of Medicare beneficiaries, removing drugs taken by fewer than 11 beneficiaries in the sample. Part B claims include beneficiaries in traditional Medicare only; Part D claims include beneficiaries in stand-alone prescription drug plans and Medicare Advantage drug plans. Using HCPCS for Part B drugs, claims were pulled from the outpatient, carrier, and durable medical equipment (DME) files, removing packaged drugs, vaccines, and claims from Maryland hospitals, Critical Access Hospitals, and dialysis facilities. Data on the approval date, generic/biosimilar reference status, and orphan status come from the FDA Orange Book (for small-molecule drugs) and Purple Book (for biologics).

To derive the top 20 separately payable Medicare Part B drugs and top 20 Medicare Part D drugs by total spending in 2019, we adjust the spending and beneficiary counts to be representative of the population. For drugs with multiple formulations and/or dosages, we add the individual total spending amounts together and count the number of unique beneficiaries (if a beneficiary switched between formulations during the year, they would only be counted once). Total spending includes the amount paid by Medicare and the beneficiary liability amount. Part D spending does not account for rebates; however, under the BBBA, Part D drugs would be ranked based on total gross spending not accounting for rebates.

Key Takeaways

The COVID-19 pandemic created unprecedented health and education challenges for children with disabilities, many of whom receive special education services. Recently, the Omicron variant, slowing vaccination rates among children, and state bans on school mask mandates have impacted school operations during the new year as well as the health, safety, and educational progress of children with special education plans. Many children receiving special education services have substantial health care needs, and services available through a child’s health insurance plan, such as Medicaid, can complement special education services. This brief describes how Medicaid and special education services work in meeting children’s needs, explores how the pandemic has affected children who receive special education services, and identifies key issues to watch moving forward. Key findings include the following:

• If a child is eligible for both special education services and Medicaid, federal law requires state Medicaid programs to pay for services that are both educationally and medically necessary.
• Medicaid/CHIP covers half of all children with special education plans. Children with special education plans covered by Medicaid/CHIP are more likely to have greater health needs compared to those with private insurance only.
• The onset of the pandemic and ensuing school closures created disruptions and challenges in how children received special education services. Many children with special education plans experienced missed or delayed services and loss of instructional time during the pandemic.

Students with special education plans may be entitled to compensatory services to make up for lost skills due to pandemic related service disruptions, and some children, such as those with disabilities related to long COVID, may be newly eligible for special education services. Medicaid can play an important role in ensuring that children receive preventive services that may have been delayed during the pandemic and access services to address needs that may have arisen due to the pandemic.

Introduction

The COVID-19 pandemic has had a disproportionate impact on people with disabilities, including children, whose health and functional needs place them at increased risk of severe illness or death from COVID-19 and who may require special education services that may not be adequately provided in education settings modified by the pandemic. There are an estimated 6.7 million children¹ , or 9% of all children in the U.S., who currently have special education plans² , and over two-thirds of these children have special health care needs.³  Throughout the pandemic, these children have experienced delayed or missed services and losses in instructional time, which can have implications for their ability to continue to progress in their education. As a major health insurance provider for children with special education plans, Medicaid can provide important services to these children as well as ensure that children receive other preventive services that may have been delayed during the pandemic and access services to address needs that may have arisen due to the pandemic, such as mental health treatment.

While students have largely returned to in-person learning this school year, challenges for children receiving special education services remain. A number of lawsuits are challenging state bans on school mask mandates, arguing that these bans violate the right of children with disabilities to safely attend school. Further, the recent, rapid spread of the Omicron variant has created additional instability for students and some schools have temporarily switched to remote learning, a move that may make it difficult to provide all needed services to children with special education plans. While the Pfizer-BioNTech COVID-19 vaccine is now authorized for school-aged children, vaccination among young children is not yet widespread. This brief explains how Medicaid and special education services intersect, explores the pandemic’s implications for children receiving special education services, and identifies key issues to watch moving forward. For additional context, the appendices provide information on what is required under federal special education law and includes supporting data tables.

What is the intersection between Medicaid and special education services?

If a child is eligible for both special education services and Medicaid, federal law requires state Medicaid programs to pay for services that are both educationally and medically necessary. This is an exception to the general rule that usually makes Medicaid the payer of last resort when other sources of coverage are available. If a device or service included in a child’s special education plan under the Individuals with Disabilities Education Act (IDEA) is also medically necessary, then Medicaid is obliged to pay before the school district.⁴  For more on what is required under the federal IDEA, see Appendix A. Children also may qualify for additional services covered by Medicaid, beyond what is required by the IDEA. For example, a child with cerebral palsy may need physical therapy to improve mobility and manage muscle contractures. The IDEA might require the school district to provide physical therapy so that the child can access and progress in their education, such as therapy targeted to moving around the school or developing skills related to their educational goals. If the child requires additional physical therapy for other purposes, such as to facilitate their ability to transfer in and out of a wheelchair at home or skills needed to access the community outside of school, such services could be “medically” but not “educationally” necessary and therefore available under Medicaid.

The scope of services that must be provided to children under federal Medicaid law is broader than what is required under the IDEA’s definition of “related services.” The Early Periodic Screening Diagnostic and Treatment (EPSDT) provision requires state Medicaid programs to cover all services that are “necessary. . . to correct or ameliorate. . .  physical and mental illnesses and conditions. . . .”⁵  Like the IDEA, EPSDT applies to Medicaid enrollees from birth through age 21. To receive federal matching funds, state Medicaid programs must cover a minimum set of services for adults (such as inpatient hospitalization and physician services) and can choose to cover additional services (such as private duty nursing and rehabilitative services). However, EPSDT means that there are no “optional” services for children; instead, if medically necessary, all services must be covered for children, regardless of whether the state chooses to cover them for adults.

Medicaid, together with the Children’s Health Insurance Program (CHIP), covers half of all children with current special education plans (Figure 1). Medicaid/CHIP is the only source of coverage for nearly four in 10 children nationwide receiving special education services, while over one in 10 have Medicaid/CHIP to supplement private insurance. Medicaid covers services that private insurance typically does not, including long-term services and supports (LTSS) and home and community-based services (HCBS), and has cost-sharing protections that help keep health care affordable for families. The share of children with special education plans covered by Medicaid/CHIP varies by state, ranging from 26% to 71%, reflecting variation in state choices about optional Medicaid eligibility pathways for children with disabilities (Appendix B Table 1).

A majority of children with special education plans covered by Medicaid/CHIP alone are children of color and live in low-income households (Appendix B Table 2). Medicaid/CHIP-only children with special education plans are more likely to be non-Hispanic Black or Hispanic compared to children with private coverage only. Medicaid/CHIP-only children with special education plans also are more likely to live in a household with an income at or below 138% of the federal poverty level (FPL, less than $29,974/year for a family of three in 2020) when compared to those with private insurance only. Additionally, most children (68%) receive their first special education plan between the ages of 4 and 11 regardless of health coverage type.

Children with special education plans covered by Medicaid/CHIP are more likely to have greater health needs compared to those with private insurance only. Medicaid/CHIP-only children with special education plans are more likely to have multiple chronic conditions and multiple functional difficulties, with over half of the Medicaid/CHIP-only group reporting four or more functional difficulties or four or more chronic conditions, compared to 38% of those with private insurance only (Appendix B Table 2). Further, children with special education plans covered by both Medicaid/CHIP and private insurance are more likely than children covered by Medicaid/CHIP alone to have four or more functional difficulties, four or more chronic conditions, or three or more service needs. These children are also more likely than children with Medicaid/CHIP alone to have special health care needs and health that usually or always affects daily activities somewhat or a great deal. Medicaid coverage can address gaps in private coverage, and children covered by both Medicaid/CHIP and private insurance often have complex health needs and are more likely to be eligible for Medicaid through a disability-related pathway. Further, parent/caretakers of Medicaid/CHIP-only children with special education plans are also more likely to parent alone and face challenges with their own physical and mental health compared to those with private insurance only.

How has COVID-19 affected children’s access to special education services?

Many children with special education plans experienced missed or delayed services and loss of instructional time during the pandemic. One report estimates that school attendance and engagement has declined since the start of the pandemic, with early data suggesting larger declines for children with disabilities. A survey released early in the pandemic (May 2020) found 40% of parents of students with special education plans reported their child was not receiving any support, and only 20% reported their child was receiving all the services they required. School districts reported it was more or substantially more difficult to provide hands-on instruction accommodations and services such as speech, physical, or occupational therapy during pandemic school closures. Students with disabilities experienced a loss of instructional time, and may have started the 2021 school year up to one year behind. Remote learning may have also been hindered by a lack of access to the internet and assistive technology to which students with disabilities have access when attending school in-person. Low-income children and children of color faced increased health and economic challenges during the pandemic, and children with special education plans within these groups, many of whom are covered by Medicaid/CHIP, likely faced additional barriers to learning and accessing services during the pandemic.

Students with special education plans may be entitled to compensatory services to make up for lost skills due to school closures or other pandemic related service disruptions. The Department of Education (DOE) guidance advises special education teams to make individualized decisions about the needs for additional services as schools return to normal operations. The American Academy of Pediatrics noted the “critical” role of school-based services such as physical, occupational, and speech-language therapies and mental health services which often were disrupted during the pandemic. Other researchers have found service disruptions in these areas during the pandemic, noting that some services “may be challenging or even impossible to deliver virtually,” leaving children with special health care needs who could not receive in-person services with unmet needs. Further, according to DOE guidance, some children may be newly eligible for special education services, as those with disabilities related to long COVID can qualify for services under the IDEA or Section 504. For more information about eligibility under both laws, see Appendix A.

What are key issues to watch going forward?

As most schools returned to in-person learning in the fall of 2021, lawsuits have been filed in a number of states challenging government bans on school mask mandates as violating the rights of children whose health conditions put them at increased risk of severe illness or death from COVID-19. Although the CDC recommends distancing and masks for all staff and students regardless of vaccination status for in-person learning, some state and local governments have prohibited school districts from adopting school mask mandates. Multiple lawsuits have been filed arguing that these bans prevent children with disabilities from attending school safely in person, in violation of the Americans with Disabilities Act and Section 504. Federal district courts in Iowa, South Carolina, and Tennessee have granted preliminary injunctions blocking governors’ bans on school mask mandates. On the other hand, the 5^th Circuit Court of Appeals has put on hold a Texas federal district court’s permanent injunction that blocked a governor’s ban on school mask mandates, which means that the ban will go into effect while the appeal is pending. Additionally, a Florida federal district court denied a motion for a preliminary injunction in a case seeking to block a similar governor’s ban. All of these cases are currently on appeal.

Some school districts are struggling to stay open amid the rapid spread of the Omicron variant. Despite calls from the Biden Administration, governors, and mayors for schools to remain open, many school districts have decided to temporarily return to remote learning following the recent spike in COVID-19 cases. School districts are facing high case rates among students and staff, making it difficult to re-open and maintain student safety. At the same time, returning to virtual learning makes it more difficult for school districts to provide all needed services to students with special education plans and may put these children at further risk for falling behind.

COVID-19 vaccine uptake among young children has slowed. Children ages 5 and older are now eligible to be vaccinated against COVID-19. Following an initial wave of enthusiasm and a slight uptick for a period in December, vaccine uptake among 5-11 year-olds, who recently became eligible, has declined. As of January 12, 2022, 27% of 5-11 year-olds and 64% of 12-17 year-olds have received at least one dose of the COVID-19 vaccine. There may be unique challenges to vaccinating young children, particularly those from low-income families who may face additional barriers to access, and Medicaid can play a role in facilitating access to vaccines for these children. Further, the US Food & Drug Administration’s (FDA) recently authorized booster shots of Pfizer-BioNTech’s COVID-19 vaccine for children ages 12 to 15.

Children who receive special education services already faced disparities compared to their non-disabled peers and lost instructional time and disruptions in access to related services during the pandemic have exacerbated those differences. Medicaid, together with CHIP, covers half of children with special education plans, and these children have greater health needs compared to children with special education plans covered by private insurance. This means Medicaid supports children with special education plans by providing both educationally and medically necessary services as well as ensuring that children receive the other medical and preventive services they need.

Appendix A

What does federal special education law require?

Under the federal Individuals with Disabilities Education Act (IDEA), school districts must provide children with disabilities with the services necessary to receive a “free appropriate public education.” ⁶  The IDEA applies to children from birth through age 21⁷  and also provides federal funds to assist states with meeting these obligations. Under the IDEA’s “child find” requirement, states must identify and evaluate all children with disabilities, including those who are homeless and those who attend private schools.⁸  A parent also may request an evaluation for their child. A team of “qualified professionals” and the child’s parent then reviews the evaluation findings to determine whether the child meets the IDEA’s definition of a “child with a disability.”⁹  Children qualify if they are in need of special education and related services due to an intellectual disability, hearing impairment, speech language impairment, visual impairment, emotional disturbance, orthopedic impairment, autism, traumatic brain injury, another health impairment, specific learning disability, deaf-blindness, or multiple disabilities.¹⁰ 

In addition to special education services, children with disabilities may be entitled to “related services” such as therapies or other supportive services. “Related services” include transportation as well as “developmental, corrective, and other supportive services as are required to assist a child with a disability to benefit from special education.”¹¹  Types of related services include speech-language pathology and audiology, interpreting, psychological, physical and occupational therapy, recreation, counseling, orientation and mobility, school health and school nurse, social work in schools, and parent counseling and training. Related services do not include medical services, unless used for diagnostic or evaluation purposes.

Children who qualify for special education must be served in the “least restrictive environment.” This means that children with disabilities must be educated with their nondisabled peers “to the maximum extent appropriate.” Children with disabilities may be placed in separate classes or separate schools or otherwise removed from the regular education environment “only if the nature or severity of the disability is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily.”¹² 

A team determines the services that a child receives and the child’s educational placement. The team includes the child’s parent, a regular education teacher, a special education teacher, a school district representative, and someone who can interpret the instructional implications of evaluations. The team also may include other individuals with knowledge or special expertise, such as related services personnel, and should include the child “whenever appropriate.”¹³  Notably, a child with a disability under the IDEA does not have to receive all of the special education and related services that would enable them to achieve their maximum potential. Instead, according to the U.S. Supreme Court, school districts only must provide services that are “reasonably calculated to enable a child to make progress appropriate in light of the child’s circumstances.”¹⁴ 

Children who do not qualify for special education services under the IDEA may be eligible for reasonable accommodations under Section 504 of the Rehabilitation Act. This federal law prohibits disability-based discrimination in programs or activities that receive federal financial assistance, including public schools. Students qualify under Section 504 if they have a physical or mental impairment that substantially limits one or more major life activities. Examples of major life activities include caring for one's self, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working.¹⁵  Children with disabilities who are eligible under Section 504 may receive “regular or special education and related aids and services designed to meet the[ir] individual educational needs. . . as adequately as the needs of students without disabilities are met.”¹⁶  Examples of reasonable accommodations that may be in a Section 504 plan, depending on a child’s needs, include extra time to take tests or materials in alternative formats.

Appendix B

1. KFF analysis of 2020 National Survey of Children’s Health. ↩︎
2. Defined as children receiving special education services under special education or early intervention plan (often an Individualized Education Plan or Individualized Family Service Plan) as identified by a parent. ↩︎
3. As defined by the U.S. Department of Health and Social Services, these children “have or are at increased risk for chronic physical, developmental, behavioral or emotional conditions and also require health and related services of a type or amount beyond that required by children generally.” U.S. Department of Health & Human Services, Health Resources & Services Administration, Maternal & Child Health, Children with Special Health Care Needs (Date Last Reviewed: March 2019), https://mchb.hrsa.gov/maternal-child-health-topics/children-and-youth-special-health-needs#ref1. ↩︎
4. 20 U.S.C. § 1412 (a)(12)(A); 42 U.S.C. § 1396b (c); 34 C.F.R. § 300.142 (a)(1). ↩︎
5. 42 U.S.C. §§ 1396a (a)(43); 1396d (r)(5). ↩︎
6. 20 U.S.C. § 1401 et seq. ↩︎
7. Children from birth until age 3 may receive early intervention services through an “individualized family service plan,” while those ages 3 through 21 may receive special education and related services through an “individualized education program.” 20 U.S.C. § 1414 (d); 34 C.F.R. § 300.320. ↩︎
8. 34 C.F.R. § 300.111. ↩︎
9. 34 C.F.R. § § 300.301-300.306. ↩︎
10. 34 C.F.R. § 300.8 (a). ↩︎
11. 34 C.F.R. § 300.34 (a). ↩︎
12. 34 C.F.R. § 300.114. ↩︎
13. 34 C.F.R. § 300.321. ↩︎
14. Endrew F. v. Douglas Cty. Sch. Dist., 137 S. Ct. 988, 999 (2017). ↩︎
15. 34 C.F.R. § 104.3(j)(2)(ii). ↩︎
16. U.S. Dep’t of Education, Office for Civil Rights, Protecting Students with Disabilities, Frequently Asked Questions About Section 504 and the Education of Children with Disabilities (last accessed Nov. 18, 2021), https://www2.ed.gov/about/offices/list/ocr/504faq.html. ↩︎