In a new analysis of survey data from state Medicaid home care programs, KFF found that in most years since 2016, there have been nearly 700,000 people on waiting or interest lists for expanded home and community-based services (HCBS), with a total of 692,000 across 38 states in 2023 and waiting lists averaging three years.

People with intellectual or developmental disabilities make up almost three-quarters of waiting lists, with seniors and adults with physical disabilities constituting another quarter. People on waiting lists may not have access to increased hours of home care to support activities such as bathing, dressing, preparing meals and managing medication as well as increased types of community care, such as adult day care and supported employment, which are often designed to meet the needs of specific populations.

States can cap enrollment for these services, resulting in waiting lists (also described as “interest lists”) for expanded home care programs when demand surpasses the available slots. While these lists are an imperfect measure of unmet need, there are currently no alternative measures.

Home care waivers that allow states to offer these services have been in place since the 1980s, but their use increased after the Supreme Court’s Olmstead decision in 1999, which characterized the unjustified institutionalization of people with disabilities as illegal discrimination. As the 25th anniversary of Olmstead nears, people have cited waiting lists as one reason for continued discrimination based on disability.

Shortages of home care workers could worsen states’ waiting list times. Although states reported increasing provider payment rates and other efforts to bolster the workforce, challenges remain and some state policies for addressing these challenges ended with the conclusion of pandemic-era programs.

Another factor affecting waiting list volumes is whether states screen for Medicaid eligibility before adding people to waiting lists. Between 2018 and 2020, waitlist sizes for expanded home care programs fell by 19% nationally, largely due to eligibility assessments added to waiting lists. Today, all but six states screen their waiting lists for Medicaid eligibility.

Rules proposed earlier this year would require states to report the size of their waiting lists.

With federal regulators seeking public input on the potential benefits, costs, and implementation considerations of requiring private health insurance plans to cover over-the-counter preventive products without a prescription, a new KFF post explores the issues relevant to covering over-the-counter contraceptives. These contraceptives include Opill, the first daily oral contraceptive pill to receive FDA approval for over-the-counter availability.

The analysis draws on the lessons learned from KFF staff interviews with more than 80 key players nationally and in states that have passed laws or taken other actions to expand access to birth control without a clinician’s prescription. It describes implementation challenges and strategies including standardized billing protocols for over-the-counter products, enrollees and pharmacists’ awareness of required coverage, and the impact of mitigating pharmacist and pharmacy staff overload.

Under current federal policy guidelines, insurers are generally required to cover prescribed FDA-approved contraceptives with no patient cost-sharing. In October 2023, the Departments of Treasury, Labor, and Health and Human Services issued a request for information related to requiring private insurers to cover over-the-counter preventive services and supplies without a prescription. Comments on the proposal are due on December 4.

Note: This policy watch was updated on April 17, 2024 to incorporate the latest available data.

In 2023, the FDA approved the first over-the-counter (OTC) daily oral contraceptive pill, Opill, and more recently, the first OTC at-home test for chlamydia and gonorrhea, Simple 2 Test. With these OTC products becoming available online and/or in stores soon, the implementation issues raised about the availability and affordability of these products and other OTC preventive supplies have garnered the attention of policymakers and advocates. Private insurers and Medicaid generally require a prescription to cover OTC products, so even though these products will be available without the need to obtain a prescription from a clinician, coverage without a prescription will be limited without federal or state action.

In October 2023, the Departments of the Treasury, Labor, and Health and Human Services issued a request for information to gather public input regarding the potential benefits, costs, and implementation considerations of requiring private health insurance plans to cover OTC preventive services and supplies without a prescription.

This policy watch addresses key considerations for the implementation of insurance coverage for non-prescribed OTC contraceptives based on the lessons learned from KFF’s 2023 study of Insurance Coverage of OTC Oral Contraceptives. KFF staff interviewed more than 80 individuals representing key players in states that require state regulated plans to cover certain OTC contraception methods without a prescription and without cost sharing.

Background

Current federal policy does not require insurance coverage of OTC contraceptives without a prescription (unlike the ACA contraceptive coverage requirements that mandate coverage with no patient cost-sharing with a prescription). To date, however, seven states have passed laws requiring state-regulated private health plans to cover certain OTC contraception, such as emergency contraception and condoms, without the need for a prescription and without cost-sharing (Figure 1). State health insurance requirements apply to individual plans, plans offered by public employers, and fully-insured plans offered by private employers, but not to self-funded plans offered by private employers, which cover nearly two-thirds of workers with employer-sponsored insurance. Seven states use state-only funds to provide coverage for certain non-prescribed OTC contraceptives for Medicaid beneficiaries. In other states, health plans rarely offer this coverage to their enrollees voluntarily.

Billing Protocols for OTC Contraceptives in States that Require Coverage

In states where coverage for OTC contraception is required without a prescription, there are generally two pathways for consumers to receive coverage.

• Direct billing at the pharmacy counter: This is the most commonly used billing method and requires consumers to obtain the product at the pharmacy counter. Depending on the insurer’s protocol, the pharmacist or technician must enter a National Provider Identifier (NPI), a unique, 10-digit number issued by the Centers for Medicare and Medicaid Services (CMS) to health care providers, including pharmacists, which is also used for billing purposes. This claim is then transmitted to the plan, the pharmacy is reimbursed, and the policyholder receives the product in much the same way that most prescribed drugs are processed.
• Purchasing the OTC contraceptive product outside the pharmacy, with the enrollee submitting a pharmacy claim to the plan: This method of coverage is used by few private health plans and is similar to the reimbursement process that was used for some at-home COVID-19 tests. While this option can expand access to coverage in certain situations, it potentially poses financial and logistical barriers for the enrollee because the policyholder needs to pay the cost upfront and navigate the plan’s claims and reimbursement process.

Considerations for Implementing Coverage of OTC Contraception

In general, most private insurance and Medicaid payment systems have been set up to process claims for prescribed drugs and currently lack the infrastructure to process claims for non-prescribed OTC drugs. Key players interviewed by KFF cited several common implementation challenges and possible approaches, including:

• Establishing universal NPI numbers for OTC products and standardized billing protocols: Interviewees noted that billing protocols for non-prescribed OTC contraception vary widely by health insurance plan, leading to confusion for some pharmacists. Some states that have implemented coverage of OTC contraceptives without a prescription for their Medicaid enrollees have created a universal NPI number for each covered OTC contraceptive to avoid the need to for pharmacists or pharmacies to enter their individual NPI numbers for an OTC product. In interviews with pharmacists, some said they were reluctant to enter their own NPI number for a product they did not prescribe, citing concerns about potential legal liability. A standardized billing process across payors would facilitate any federal or state requirement to cover OTC drugs.
• Increasing awareness and communication: There has been little specific outreach about this covered benefit to health plan enrollees and pharmacists, and there has been limited communication about billing protocols between pharmacies, pharmacy benefit managers (PBMs), health plans, and state insurance departments. Increasing awareness and improving communication across key players can help increase utilization of this covered benefit and facilitate coverage for OTC contraceptives.
• Mitigating pharmacist and pharmacy staff overload: The role and scope of pharmacists and pharmacy staff in health care have rapidly expanded over the years, with a growing number of pharmacists dispensing medication, administering vaccines, and counseling patients, among other services. Staff at major drugstore chains recently staged walkouts over difficult working conditions. Processing claims for OTC contraceptives adds another layer of responsibility for pharmacists who are already overstretched. Properly assessing pharmacy staffing needs, compensating pharmacists for the time it takes to process these claims, and streamlining the billing process were identified as factors that could alleviate these challenges and enable pharmacists and other staff to play a role in facilitating coverage of OTC contraceptives.

Broader Implications

Coverage for non-prescribed preventive health care items available over the counter could facilitate access to a broad range of OTC products that support sexual and reproductive health, including emergency contraceptive pills; condoms; folic acid supplements; and the newly-FDA-approved STI tests, and pave the way for new contraceptive products that may become FDA approved for OTC use in the future.

Across the spectrum of key players, the KFF research reveals that there is interest and engagement about the potential of OTC contraception to broaden the availability of and access to contraceptive options, but the extent to which this occurs will depend on many factors, including state and federal policies and guidance, pharmacy engagement, billing systems, and public and provider awareness, and modifications to current systems of coverage.

Additional KFF resources on Over-The-Counter Contraceptive Pills:

Report: Insurance Coverage of OTC Oral Contraceptives: Lessons from the Field

Web Event: Will Insurance Cover Over-the-Counter Contraceptive Pills? A Discussion of Coverage Options and Challenges

Issue Briefs:

• Over-the-Counter Oral Contraceptive Pills
• Oral Contraceptive Pills: Access and Availability
• Interest in Using Over-the-Counter Oral Contraceptive Pills: Findings from the 2022 KFF Women’s Health Survey

This brief gauges Medicaid enrollees’ perspectives on their health insurance, based on findings from KFF’s Survey of Consumer Experiences with Health Insurance, fielded February 21 through March 14, 2023. Importantly, people covered by different types of insurance have different levels of income, education, and health status, which may affect their experiences and views. Adults with Medicaid are more likely to be younger, female and to have lower incomes. They are also more likely to describe their health as “fair” or “poor” than those with other coverage. Medicaid also has limited or negligible premiums and out-of-pocket costs, which may affect the types of problems enrollees face. This brief provides an overview of the survey findings, describes Medicaid enrollees’ views of their health and health coverage, explores problems those with Medicaid experience, compares how Medicaid performs relative to Medicare and private coverage, and reviews variation in Medicaid experiences. Key take-aways include the following:

• Medicaid enrollees report worse health status compared to those with other coverage, which could lead to greater need for health care and more opportunities to encounter problems with the system. Still, the large majority (83%) of Medicaid enrollees rate the overall performance of Medicaid positively. However, over half of Medicaid enrollees report having experienced a problem in the past year, and relative to Medicare and employer-sponsored insurance (ESI), Medicaid enrollees are more likely to report certain negative outcomes from insurance problems.
• Medicaid enrollees report fewer cost-related problems relative to those with Marketplace coverage and ESI; however, Medicaid enrollees report more problems with prior authorization and provider availability compared to people with other insurance types.
• Across racial and ethnic groups, most enrollees rate their Medicaid coverage positively, with White Medicaid enrollees the most likely to describe their insurance as “excellent.” Similar shares of enrollees among all racial and ethnic groups report experiencing problems with their coverage. Similar to the experiences of people with other coverage, Medicaid enrollees who utilize more health care services experience more problems with their insurance.

Proposed federal rules related to Medicaid access and prior authorization that are pending aim to address some of the problems faced by Medicaid enrollees.

How do Medicaid enrollees view their health and health coverage?

A higher share of Medicaid enrollees rate their health status as fair or poor relative to adults with other coverage. About one-third (32%) of those with Medicaid describe their physical health status as “fair” or “poor.” Over a third (36%) of Medicaid enrollees report “fair” or “poor” mental health, a rate much higher than Marketplace enrollees (20%) and over double the rate of those with Medicare or employer-sponsored insurance (ESI).

Despite worse health status – which could lead to greater need for health care and more opportunities to encounter problems with the system – the large majority (83%) of Medicaid enrollees rate the overall performance of their current health insurance as either “excellent” or “good.” This positive rating is similar to ratings among those with ESI (80%), lower than those with Medicare (91%) and higher than those with Marketplace coverage (73%).

Even though most enrollees view their insurance positively, over half report having experienced a problem in the past year.  The share of those with Medicaid reporting any problem with their insurance (58%) is similar to those with ESI (60%) and Marketplace coverage (56%), and higher than those with Medicare (51%). Though majorities across insurance types report at least some problem with their insurance, the nature of problems people experience differs across health coverage types. For example, those with private coverage are more likely to experience cost-related issues while those on Medicaid are more likely to report problems with prior authorization and provider availability.

Relative to adults with Medicare and ESI, Medicaid enrollees are more likely to report certain negative outcomes from insurance problems.  For example, Medicaid enrollees are more likely to report experiencing a decline in health (23%) and being unable to receive recommended treatment (26%) because of a problem they had with their insurance. Medicaid enrollees’ experiences on these measures are similar to those with Marketplace coverage. However, Medicaid enrollees are less likely than those with other insurance types to report having to pay more than expected for treatment or services (12%).

In what ways do Medicaid enrollees view their coverage more favorably compared to views of those with other coverage?

Medicaid enrollees are less likely to report cost-related problems than those with Marketplace coverage and ESI, but as likely to report these problems as those with Medicare.  Smaller shares of adults with Medicaid (11%) say their insurance paid less than they expected for a medical bill, compared to those with private coverage (ESI 35%, Marketplace 28%). Similarly, Medicaid enrollees are less likely to report that insurance paid nothing at all for a service they thought was covered (12%) compared to those with private coverage (ESI 21%, Marketplace 20%). Smaller shares of adults with Medicaid report delaying a visit to the doctor’s office in the past year due to cost (10%) than those with ESI (17%) or Marketplace plans (18%).  Enrollees with Marketplace and ESI plans can face significant cost sharing in the form of high deductibles, high out-of-pocket limits, and coinsurance or copay requirements. Given that Medicaid enrollees have low incomes, federal rules generally have protections to limit out-of-pocket costs that can help improve access.

Medicaid enrollees are more likely to report having an easier time understanding parts of their insurance coverage than privately insured adults. Over seven in ten (73%) Medicaid enrollees compared to over six in ten (62%) of those with Marketplace plans and 65% of those with ESI say they find it easy to understand statements explaining whether or how much insurance will pay for care; these statements are called Explanation of Benefits, or EOBs. Additionally, more than eight in ten Medicaid enrollees describe understanding what they would owe out-of-pocket as easy, a much higher share than those with ESI (66%) or Marketplace coverage (59%). About seven in ten Medicaid enrollees easily understand what their insurance does and does not cover, while smaller shares of adults covered in Marketplace plans (54%) or ESI (60%) cite similar ease. Medicaid enrollees also report having an easier time understanding specific terms, such as “deductible,” “coinsurance,” “prior authorization,” or “allowed amount” than those with private insurance. This comparative ease in understanding by Medicaid enrollees may be a result of limited out-of-pocket costs for Medicaid plans leading to a simpler plan design.

Although a majority of Medicaid enrollees are unaware they have a right to appeal insurance decisions, Medicaid enrollees are more likely to be aware of these appeal rights than those who are privately insured. Less than half of Medicaid enrollees (45%) report being aware of their legal right to appeal to a government agency or an independent medical expert if their health insurance refuses to cover medical services they think they need, with most either incorrectly saying they do not have appeal rights (7%) or saying they are not sure if this is a right they have (48%). However, Medicaid enrollees have a higher awareness of their right to an appeal than those who are privately insured, with 34% of those with ESI or Marketplace coverage reporting they are aware of their right to appeal insurance decisions.

In what ways do Medicaid enrollees view their coverage less favorably compared to views of those with other coverage?

Medicaid enrollees are more likely to report problems with prior authorization. About one in five adults with Medicaid (22%) report that their health insurance denied or delayed prior approval for a treatment, service, visit, or drug before they received it, which is double the rate of adults with Medicare (11%). Consumers with prior authorization problems tend to face other insurance problems and are far more likely to experience serious health and financial consequences compared to people whose problems did not involve prior authorization.

Medicaid enrollees were also more likely to have problems finding providers available to care for them. One in three Medicaid enrollees report that a doctor covered by their insurance who they needed to see did not have available appointments, the highest share of any coverage group. Nearly one in five adults with Medicaid also report that a doctor or hospital they needed was not covered by their insurance, a higher share than adults with Medicare (9%) or ESI (13%) and a similar share to adults with Marketplace plans (20%). Overall, adults with Medicaid are more likely than adults with any other insurance type to report receiving care in the emergency room, with Medicaid enrollees twice as likely to report receiving care in the emergency room compared to those with ESI or Marketplace coverage.  Higher emergency room utilization may be due to barriers in accessing providers as well as a number of other factors, including higher disease burden and minimal cost sharing requirements for emergency room care.

While a large body of research shows that Medicaid beneficiaries have substantially better access to care than people who are uninsured, lower provider payment and participation rates may contribute to findings that Medicaid enrollees experience more difficulty obtaining health care than those with private insurance. In 2021, MACPAC found physicians were less likely to accept new Medicaid patients compared to other payers, but rates may vary by state, provider type, and setting. Acceptance of new Medicaid patients was much higher where physicians practiced in community health centers, mental health centers, non-federal government clinics, and family clinics compared to the average for all settings.

While the majority of Medicaid enrollees rate the quality of available providers positively, Medicaid enrollees are less likely to do so relative to individuals with other insurance types. Overall, more than two in three Medicaid enrollees (69%) report positive perceptions of provider quality. However, adults with Medicare, Marketplace, and ESI all exceed Medicaid enrollees in satisfaction provider quality satisfaction, with 90% of Medicare adults, 78% of Marketplace adults, and 84% of ESI adults rating the quality of providers as “good” or “excellent.”

Medicaid enrollees report issues with availability and quality for mental health providers. Adults with Medicaid and Marketplace coverage are more likely than those with ESI or Medicare to negatively rate their insurance when it comes to the availability of mental health providers. Medicaid enrollees more frequently report “fair” or “poor” mental health and may, therefore, have a greater need for mental health providers than adults with other coverage. When looking specifically at adults with Medicaid who describe their own mental health as “fair” or “poor,” notable shares give their plan a negative rating for the availability (47%) and quality (41%) of mental health therapists and professionals.

Where is there significant variation within Medicaid?

Few enrollees across racial and ethnic groups report their Medicaid coverage as fair or poor, with a large share of White Medicaid enrollees describing their insurance as excellent. Across all racial and ethnic groups, 80% or more of enrollees rate their Medicaid positively. White adults are the most likely to refer to their insurance as “excellent,” with more than 4 in 10 White adults (44%) describing their Medicaid coverage this way compared to 34% of Hispanic adults and 29% of Black adults. Larger shares of White Medicaid enrollees compared to Black or Hispanic enrollees also report the quality of doctors and hospitals available to them as “excellent.” Notably, for problems frequently faced by Medicaid enrollees, such as prior authorization or provider availability, similar shares of Black, White, and Hispanic adults report experiencing these issues.

Among those with Medicaid, Black adults are the most likely to have received care in an emergency room at least once in the past year. Nearly six in ten Black Medicaid enrollees report receiving care in an emergency room in the past year, compared to about four in ten White and Hispanic Medicaid enrollees. As noted above, adults with Medicaid are more likely than adults with any other insurance type to report receiving care in the emergency room.

Not surprisingly, Medicaid enrollees who utilize more health care services experience more problems with their insurance. Across all insurance types, adults with fair or poor health status – who have greater need for health care – are more likely to face problems such as lack of appointment availability and high prescription drug costs. In addition to health status, those who have more frequent interactions with their health insurance are also more likely to report problems. When comparing Medicaid enrollees who had over ten visits in the past 12 months to enrollees who had two or fewer visits, high health care utilizers are much more likely to have experienced a problem with their health insurance than lower users. Higher shares of moderate health care utilizers (those who had seen a provider between three to ten times in the past 12 months) also tended to face problems with their insurance compared to low utilizers. These high and moderate health care utilizers are more likely to report that a doctor they needed to see did not have available appointments, that a mental health therapist, treatment, or prescription was not covered by their insurance, or that their health insurance did not cover or required a very high copay for a prescription drug. Compared to both moderate and low health care utilizers, high utilizers are more likely to report running into prior authorization issues or reaching the limit on the number of visits or services their insurance would pay for a specific illness or injury.

What to Watch

Recent federal proposed rules attempt to address some issues related to availability of providers and access in Medicaid. On April 27, 2023, the Biden Administration released two notices of proposed rulemaking (NPRMs) to help ensure access to quality health care in Medicaid and the Children’s Health Insurance Program (CHIP). The proposed rules include changes to Medical Care Advisory Committees (to allow for more meaningful engagement from Medicaid enrollees), increase transparency for fee-for-service (FFS) and managed care payments, establish national maximum appointment wait time standards for managed care enrollees, and require state monitoring related to access and network adequacy for managed care plans. Currently, federal law requires Medicaid managed care plans to assure that they have capacity to serve expected enrollment in their service area and maintain a sufficient number, mix, and geographic distribution of providers but there are no uniform standards.

Centers for Medicare and Medicaid Services (CMS) proposed rules, Office of the Inspector General (OIG) recommendations, and state legislation could help to address Medicaid prior authorization issues. Prior authorization is a tool long used to control spending and promote cost effective care, but it can also delay care and result in negative clinical outcomes. A recent review by the U.S. Department of Health and Human Services OIG found that in 2019, Medicaid MCOs had an overall prior authorization denial rate of 12.5% – more than double the Medicare Advantage rate. The OIG recommended stronger state monitoring of denials and a requirement for automatic external medical reviews following MCO appeal denials. In December of 2022, the Biden Administration also proposed prior authorization regulations that would apply to Medicaid and other coverage types, but these rules focus mostly on streamlining processes, improving transparency, and reducing approval wait times. While CMS has not yet finalized these proposed prior authorization rules, a final rule may be published soon.

A range of state regulatory actions have also focused on prior authorization practices. New state laws or updates to existing ones affecting prior authorization for Medicaid enrollees have passed in states such as Georgia, Illinois, and Washington state. State requirements include: new reporting on prior authorization standards and claims denials, shortened time frames for decision-making, allowing certain providers to bypass prior authorization to limit delays (e.g. “gold carding”), and restrictions on the use of clinical criteria developed by insurers to make coverage decisions. California has also recently began relaxing prior authorization requirements for diabetes care for Medi-Cal members.

Conclusion

Overall, most adults rate their insurance coverage favorably but the complex nature of health care and differences in insurance design and out-of-pocket costs lead to variations in beneficiary experiences. Compared to adults with private coverage or Medicare, Medicaid enrollees are more likely to face problems with provider availability and prior authorization and are at greater risk of experiencing negative outcomes as a result of problems with their insurance, including a decline in their health. However, because of federal rules that limit out-of-pocket costs, Medicaid enrollees are less likely to report cost-related problems or difficulty understanding what they would owe out of pocket. Pending federal rules addressing provider availability for Medicaid managed care enrollees may improve access to care for these enrollees. Proposed regulations from the Biden administration may streamline prior authorization processes and impact wait times but fall short of OIG recommendations for stronger state monitoring of denials and required automatic external medical reviews.

The latest KFF COVID-19 Vaccine Monitor survey reveals that half (51%) of all adults nationally say they “definitely” or “probably” will not get the latest COVID-19 vaccine, with many saying that they aren’t worried about catching the virus.

One in five (20%) say that they’ve already gotten the new vaccine that became available in September, with an additional 28% saying they “definitely” or “probably” will get the new shot. The rest say they “definitely” or “probably” will not get the new shot – a large group that includes three-in-10 (31%) of all adults who previously got a COVID vaccine but now say they don’t plan to get the updated vaccine.

Most Black adults (59%) and Hispanic adults (59%) say they have either already gotten the vaccine or expect to get the new vaccine. In contrast, most White adults (58%) say they “definitely” or “probably” will not get it. Partisanship also continues to play an outsized role in vaccine attitudes. For example, eight-in-10 (80%) White adults who identify as Republicans say they do not plan to get the new vaccine – more than twice the share of White adults who identify as Democrats (29%).

Among previously vaccinated adults who have not yet gotten latest vaccine, half (52%) cite a lack of concern about getting the virus as a reason. Fewer say being too busy (37%), waiting to get it later (32%), or having had bad side effects after a previous dose (27%) are all reasons why they haven’t gotten the new shot.

About one-in-six (16%) say that they can’t afford to take time off work to get the vaccine, including more than a third (35%) of Hispanic adults and one-in-five (22%) Black adults. About one-in-eight (13%) cite not being able to get a vaccine appointment as a reason for not getting the new shot.

Heading into the fourth holiday season since COVID-19 emerged, most people are not too worried about its potential impact on themselves or their friends and families, the survey shows.

For instance, three quarters (74%) of the public say that they are “not too worried” or “not at all worried” about getting COVID-19 over the holidays, almost three times the share who are “very” or “somewhat” worried (26%). At least two- thirds (68%) say that they are not worried about spreading the virus to people close to them, more than twice the share who are worried (31%).

The public is split on precautions being taken because of COVID-19 this fall and winter. Half (50%) of the public plans to take at least one of five potential precautions to reduce their risks during the fall and winter: Avoiding large gatherings (35%); wearing a mask in crowded places (30%); avoiding travel (25%); avoiding indoor restaurants (19%); or taking a COVID-19 test before visiting family and friends (18%). The other half plans to take none of those precautions.

People who are at least 65 years old – a group especially at risk of severe COVID-19 illness – are among the most likely to say that they’ve already gotten the new vaccine (34%), though they are no more likely than younger adults to say that they plan to take at least one of the five precautions.

Black (72%) and Hispanic (68%) adults are much more likely than White adults (39%) to say they plan to take at least one of those precautions. Similarly, Democrats (66%) are more than twice as likely as Republicans (29%) to say they plan to take precautions.

Designed and analyzed by public opinion researchers at KFF, the survey was conducted from October 31-November 7, 2023, online and by telephone among a nationally representative sample of 1,401 U.S. adults. Interviews were conducted in English and in Spanish. The margin of sampling error is plus or minus 4 percentage points for the full sample. For results based on other subgroups, the margin of sampling error may be higher.

Today, KFF Health News and The New York Times published the first phase of an investigation into America’s long-term care crisis, which has left many in the boomer generation facing the prospect of exhausting their financial resources as the price tag for care explodes. Dying Broke, the investigative series, uses KFF polling, original analysis and interviews with experts and impacted individuals and their families to examine the challenges facing families and caregivers in navigating long-term care. 

The financial and emotional toll of providing and paying for long-term care is wreaking havoc on the lives of millions of Americans. Paid care, either at home or in a facility, is often so expensive that only the wealthy can afford it, and many of the for-profit companies providing care raised their prices sharply during the pandemic. The ongoing shortage of health care workers is also worsening the situation. 

The project found that nearly three million older Americans who need long-term help are not receiving it, in large part because of the high costs of assisted living facilities, nursing homes and aides at home. The United States spends less on long-term care than do most wealthy countries. As part of this project, KFF conducted polling to help shed light on the U.S. public’s awareness of, attitudes about and experiences with long-term care services and supports. 

The series tells the stories of some of the many people who must drain their lifetime savings to pay for care as well as the stories of the spouses and children, particularly daughters, who must make tremendous sacrifices to provide care. The first articles appear today on kffhealthnews.org and nytimes.com.

“There’s a reason this topic is a staple of so many family Thanksgiving dinner conversations,” said Jordan Rau, a senior correspondent at KFF Health News. “The kinds of no-win choices facing the people and their families we profile in these articles are ones that can happen to anyone—and too often do.”

“In interviewing many families with aging relatives, I was struck by how woefully unaware people are of how much long-term care can cost,” said Reed Abelson, health care reporter at The New York Times. “Many are amazingly resilient in finding ways to get care for their loved ones, but the lack of available help means people are often making tremendous sacrifices, both financially and emotionally, to provide support.” 

The series includes reporting from Jordan Rau, senior correspondent at KFF Health News; Reed Abelson, health care reporter at The New York Times and JoNel Aleccia, formerly at KFF Health News. Holly K. Hacker, KFF Health News’ data editor, and Albert Sun, a graphics editor at The New York Times, conducted data analysis.

About The New York TimesThe New York Times Company is a trusted source of quality, independent journalism whose mission is to seek the truth and help people understand the world. With more than 10 million subscribers across a diverse array of print and digital products — from news to cooking to games to sports — The Times has evolved from a local and regional news leader into a diversified media company with curious readers, listeners and viewers around the globe. Follow news about the company at NYTCo.com.

About KFF and KFF Health News KFF Health News is an award-winning news service with a national newsroom in Washington, D.C., and a rapidly growing network of regional bureaus in California, the Midwest, the Mountain States, and the South. It is the independent source for health policy research, polling, and journalism, with a mission to serve as a nonpartisan source of information for policymakers, the media, the health policy community, and the public. KFF Health News is one of four core programs at KFF and an important contributor to the field of journalism.

KFF Health News works with many editorial partners, and media outlets can publish its stories at no charge. KFF Health News also publishes stories on kffhealthnews.org and promotes them through its social media platforms. KFF Health News journalists are available for interviews about their stories. News organizations interested in working with KFF Health News should contact the news service at KHNPartnerships@kff.org, and those interested in helping to expand and improve health journalism around the country should contact KFF at healthjournalism@kff.org. 

About KFF’s PollingThe survey, The Affordability of Long-term Care and Support Services, was designed and analyzed by public opinion researchers at KFF. Conducted May 5 -14, 2022 online and by telephone, the survey includes a nationally representative sample of 1,573 U.S. adults (1,502 in English and 71 in Spanish). The margin of sampling error – including the design effect for the full sample – is plus or minus 3 percentage points. For results based on other subgroups, the margin of sampling error may be higher. 

Key Takeaways

For a three-year period following the onset of the COVID-19 pandemic, states provided continuous Medicaid enrollment in exchange for an increase in the federal share of Medicaid spending (known as the Federal Medical Assistance Percentage or “FMAP”). This policy increased Medicaid enrollment and helped decrease the uninsured rate. While total Medicaid spending also increased during the pandemic, a KFF analysis found that Medicaid spending from state and other non-federal sources remained comparable to pre-pandemic levels due to the increased federal financing. The Consolidated Appropriations Act (CAA) ended the continuous enrollment provision as of March 31, 2023 and allowed states to begin disenrolling individuals from Medicaid as early as April 2023. The CAA also phases down the enhanced federal matching funds through December 2023 if states comply with certain rules. Though the month in which states began disenrollments varied, most disenrollments will occur in state fiscal year (FY) 2024 (which ends on June 30 for most states¹ ) and millions of individuals have already been disenrolled. Considerable uncertainty remains, however, as to how Medicaid enrollment will change as “unwinding” continues and how those enrollment changes, along with the enhanced FMAP phase-down, will impact Medicaid spending.

This brief analyzes Medicaid enrollment and spending trends for FY 2023 and FY 2024, based on data provided by state Medicaid directors as part of the 23rd annual survey of Medicaid directors. Forty-eight states (including the District of Columbia) responded to the 2023 survey,²  although response rates for specific questions varied. The methodology used to calculate enrollment and spending growth can be found at the end of the brief. Most officials indicated that their enrollment and spending projections reflect what is assumed in their states’ adopted budgets, though estimates are uncertain and the effects of unwinding are evolving, with significant variation across states. Key survey findings include the following:

• Medicaid enrollment growth slowed to 6.5% in FY 2023 (down from 8.4% in FY 2022). Although estimates are uncertain, Medicaid officials projected enrollment would decline by 8.6% in FY 2024. After reaching record high enrollment, these estimates reflect a dramatic year-over-year decline in program enrollment from that high. Enrollment change estimates for FY 2024 reflect new enrollments as well as coverage losses due to unwinding, but they also assume some “churn” – that is, that some individuals losing coverage will re-enroll within the year. This “net” enrollment change estimate differs from other unwinding projections that estimate cumulative disenrollments without offsetting new enrollments and re-enrollments. The continuous enrollment provision and its subsequent unwinding were the most significant drivers of enrollment trends cited by survey respondents.
• State Medicaid officials reported total Medicaid spending (including both federal and state funds) slowed to 8.3% in FY 2023 (down from a peak of 9.8% in FY 2022) and projected total Medicaid spending will slow further in FY 2024 to 3.4%. States identified changes in enrollment as the most significant driver of total expenditure changes.
• States reported that the phase out and eventual end of the enhanced FMAP will shift the state and federal spending shares for Medicaid as state spending grows faster to make up for the declining federal share. Responding state Medicaid agencies reported that state (non-federal) spending grew by 13.0% FY 2023 and was projected to increase by 17.2% in FY 2024, even as total spending growth rates slow. State spending on Medicaid declined in FY 2020 and FY 2021 due to the pandemic-era enhanced FMAP. A few states reported that the phase out of other pandemic era federal funding and changes in the regular FMAP formula were also contributing factors to higher state spending growth.

Context

Medicaid represents $1 out of every $6 spent on health care in the U.S. and is the major source of financing for states to provide health coverage and long-term services and supports for low-income residents. Medicaid is administered by states within broad federal rules and jointly funded by states and the federal government through a federal matching program with no cap. Medicaid is a counter-cyclical program, meaning that more people become eligible and enroll during economic downturns. At the same time, states may face declines in revenues that make it difficult to finance the state share of funding for the program. After peaking following the implementation of the ACA, Medicaid enrollment and total spending growth slowed or declined in the ensuing years, likely due to improving economic conditions and restrictions permitted under the Trump Administration.

The onset of the COVID-19 pandemic and its economic impact had significant implications for Medicaid enrollment and spending. As in past economic downturns, the federal government provided additional financial assistance to states during the pandemic to help them maintain their Medicaid programs. Federal legislation prohibited states from disenrolling people from Medicaid in exchange for enhanced federal matching funds, and as a result, Medicaid enrollment grew to 94.5 million, an increase of 23.1 million or 32.4% between February 2020 and April 2023. Total Medicaid spending reached $804 billion in federal fiscal year 2022, with 29% financed by states and 71% paid by the federal government – a somewhat higher federal share than in recent years due to the pandemic-related enhanced FMAP.

State economic conditions worsened rapidly when the pandemic hit in March 2020 but recovered quickly compared to past recessions. National economic indicators such as initial unemployment claims and the unemployment rate spiked early in the pandemic but returned to pre-pandemic levels by 2022. State revenue collections followed a similar pattern, declining early in the pandemic and then rebounding. Most states saw strong revenue collections in FY 2021 and FY 2022, with revenue growth in the double digits collectively across states. Many states took the opportunity to make one time investments, enact tax cuts, build reserves, and pay down debts, with rainy day funds reaching historic levels. These favorable state fiscal conditions combined with federal fiscal relief mitigated the need for the widespread state spending cuts that occurred in prior recessions.

Fiscal conditions in most states remained strong in FY 2023, but growth in revenue collections slowed and states expressed concerns regarding their longer-term fiscal outlook. After adjusting for inflation, FY 2023 state general fund spending grew 4.4% compared to 8.1% in FY 2022. Although states had projected that revenue collections would decline in FY 2023, revenue collections outperformed projections in most states. Heading into FY 2024, many states appear be in strong fiscal positions and have built up reserve funds, but inflationary pressures, changes in consumer consumption, stock market volatility, tapering federal fiscal relief, and the impact of tax cuts on revenue collections have all added pressure and uncertainty to the state budgeting process. While there has been recent optimism that a recession will be avoided as inflation cools and job indicators remain strong, state revenue collections have started to slow or decline, and some states may have to contend with budget gaps in the coming years. According to governors’ proposed budgets for FY 2024, states together are expecting state general fund spending growth to slow (2.5% growth) and revenue growth to decline (by 0.7%).

Trends in Enrollment Growth FY 2023 and FY 2024

Medicaid enrollment grew more slowly in FY 2023 and is expected to decline in FY 2024 due to the unwinding of the continuous enrollment requirement (Figure 2). Following the onset of the COVID-19 pandemic and start of the Medicaid continuous enrollment provision, enrollment rose sharply in FY 2021 (11.1%) and continued to grow, though more slowly, in FY 2022 (8.4%) and FY 2023 (6.5%). The continuous enrollment provision ended March 31, 2023, and most states began Medicaid disenrollments in late FY 2023 (though some did not start until FY 2024). Throughout the unwinding, states will redetermine eligibility for all Medicaid enrollees and will disenroll those who are no longer eligible or who may remain eligible but are unable to complete the renewal process. Responding state Medicaid agencies project total Medicaid enrollment will decline by 8.6% in FY 2024. After reaching record high enrollment, these estimates reflect a dramatic year-over-year decline in program enrollment from that high. The FY 2024 projection reflects the net Medicaid enrollment change from FY 2023 to FY 2024 including new enrollments, coverage losses due to unwinding, and some “churn” when those who lose coverage re-enroll within the year. Estimates of both enrollment and spending are uncertain, and the effects of unwinding are evolving, with significant variation across states.

While the largest driver of enrollment trends continues to be the continuous enrollment provision and its subsequent unwinding, state Medicaid agencies also reported eligibility policy changes as an upward pressure. While unwinding was expected to result in enrollment declines, many states (almost a third of responding states in FY 2023 and nearly three-quarters in FY 2024) mentioned eligibility expansions were putting upward pressure on enrollment. Most of the reported expansions, however, are narrow in scope and not expected to fully offset the magnitude of enrollment declines expected during unwinding. The most frequently reported changes were the adoption of a new option to extend Medicaid postpartum coverage to 12 months and the new federal requirement, beginning January 2024, for all states to adopt 12-month continuous eligibility for Medicaid and Children’s Health Insurance Program (CHIP) children. (About half of states provide 12-month continuous eligibility already.) A small number of states also noted adopting the ACA Medicaid expansion or changes in eligibility policy for justice-involved populations, lawfully present or state-funded coverage of undocumented immigrants, and foster care youth who age out of foster care. A few states reported that a strong economy put downward pressure on enrollment.

Trends in Spending Growth FY 2023 and FY 2024

After peaking in FY 2022 at 9.8%, total Medicaid spending growth slowed to 8.3% in FY 2023 and is expected to slow further to 3.4% in FY 2024 (Figure 2). Spending growth increased sharply when the pandemic began in FY 2020 and continued to increase in FY 2021 and FY 2022. Most responding states (8 in 10) noted that Medicaid projections (for FY 2024) reflect the assumptions used in the state’s adopted budget; however, a few states noted projections reflect more recent assumptions and others mentioned outdated assumptions (e.g. from governor’s budget) or that their budget had not yet been approved. State Medicaid agencies reported enrollment changes as the most significant factor driving changes in total Medicaid spending. For FY 2024, the total spending growth rate is projected to slow further, and the majority of states pointed to declines in enrollment during unwinding as the most significant downward pressure. Beyond enrollment growth, about half of the responding states cited provider rate increases as an upward pressure on spending in FY 2023 and FY 2024. States noted that inflation and workforce shortages were driving higher labor costs, resulting in pressure to increase provider rates. A few states also noted expanded eligibility or benefits, utilization increases, home and community-based services (HCBS) spending, directed or supplemental payments, and/or increasing pharmacy costs were putting upward pressure on total spending. Conversely, a few states reported decreased nursing facility utilization, lower per member costs during the continuous enrollment period, pharmacy rebates, and/or MCO risk corridors as downward pressures on total spending.

State Medicaid spending growth increased in FY 2023 and is projected to increase further in FY 2024 as the enhanced FMAP expires (Figure 3). The state share of Medicaid spending typically grows at a similar rate as total Medicaid spending growth unless there is a change in the FMAP. During the Great Recession, state spending for Medicaid declined in FY 2009 and FY 2010 due to fiscal relief from a temporary FMAP increase provided in the American Recovery and Reinvestment Act (ARRA). State spending increased sharply when that fiscal relief ended. This pattern has repeated during the pandemic, with state Medicaid spending declining in FY 2020 and FY 2021, then increasing but at a slower rate than total spending in FY 2022 due to the pandemic-era enhanced FMAP. The rate of state spending growth in FY 2023 (13.0%) surpassed the rate of total spending growth (8.3%), with states noting the continuation of elevated enrollment even as the enhanced FMAP phase out began at the end of the fiscal year. A few states also reported additional pressure on state spending from changes in their regular FMAP formula and/or the end of the enhanced FMAP for HCBS implemented as part of the American Rescue Plan Act (ARPA). As the pandemic related enhanced FMAP phases completely out in FY 2024, the rate of state spending growth is expected to increase further (to 17.2%) as total spending growth continues to slow (3.4%).

What to watch?

The unwinding of the Medicaid continuous enrollment provision and phase-down of the enhanced FMAP are expected to have a significant impact on Medicaid enrollment and spending in FY 2024. While a great deal of uncertainty remains related to how Medicaid enrollment will change over the course of the unwinding, KFF analysis of state data finds that millions of people have already been disenrolled from Medicaid. Almost three-quarters of disenrollments so far have been for paperwork or procedural reasons, raising concerns that many people who remain eligible for Medicaid may be losing coverage. As noted above, state Medicaid agencies reported enrollment changes as the most significant factor driving changes in total Medicaid spending. States also mentioned challenges anticipating the acuity of members that will remain on the program after the unwinding and the share of individuals that will churn back on the program after disenrolling. In addition, CMS oversight that has resulted in reinstatement of coverage for some enrollees as well pauses in procedural disenrollments may affect the pace of unwinding and the magnitude of disenrollments. Significant variation in state unwinding policies (including the adoption of federal unwinding waivers) as well as variations in state administrative capacities and systems limitations are also likely to contribute to differing state enrollment and spending results related to unwinding.

While most states at the time of the survey reported favorable state fiscal conditions, over half of responding states noted an uncertain fiscal outlook. Most states were not anticipating state revenue shortfalls and no states reported active budget cuts at the time of the survey. However, some state Medicaid agencies did report being asked to focus on budget neutral program changes or to identify cost containment initiatives that could improve quality while reducing spending, though this is often routine in many states regardless of fiscal condition. In addition to the unwinding, macroeconomic uncertainties (e.g., inflationary pressures and workforce challenges) and the loss of the enhanced FMAP and other expiring federal pandemic relief all add pressure and uncertainty to the Medicaid budgeting process, and by extension, to the state budgeting process as Medicaid is a significant part of state budgets as both a spending and revenue source. Many Medicaid officials are therefore looking ahead cautiously knowing that they must be prepared to rapidly respond to worsening economic conditions, if and when they occur.

1. State fiscal years begin on July 1 except for these states: New York on April 1; Texas on September 1; Alabama, Michigan, and District of Columbia on October 1. ↩︎
2. The three states that did not respond to the 2023 survey are Florida, Minnesota, and South Carolina. ↩︎