The No Surprises Act (NSA) establishes new federal protections against surprise medical bills that take effect in 2022. Surprise medical bills arise when insured consumers inadvertently receive care from out-of-network hospitals, doctors, or other providers they did not choose. Peterson-KFF and other studies find this happens in about 1 in 5 emergency room visits. In addition between 9% and 16% of in-network hospitalizations for non-emergency care include surprise bills from out-of-network providers (such as anesthesiologists) whom the patient did not choose. Surprise medical bills pose financial burdens on consumers when health plans deny out-of-network claims or apply higher out-of-network cost sharing; consumers also face “balance billing” from out-of-network providers that have not contracted to accept discounted payment rates from the health plan.¹   The federal government estimates the NSA will apply to about 10 million out-of-network surprise medical bills a year.

The NSA will protect consumers from surprise medical bills by:

• requiring private health plans to cover these out-of-network claims and apply in-network cost sharing. The law applies to both job-based and non-group plans, including grandfathered plans² 
• prohibiting doctors, hospitals, and other covered providers from billing patients more than in-network cost sharing amount for surprise medical bills.

The NSA also establishes a process for determining the payment amount for surprise, out-of-network medical bills, starting with negotiations between plans and providers and, if negotiations don’t succeed, an independent dispute resolution (IDR) process.

Federal agencies published two interim final regulations and another proposed rule this year to implement the law.³  This brief summarizes key provisions that will take effect in 2022.

New federal protections apply to most surprise bills

Protections will apply to most surprise bills for specific types of services provided in certain settings.

Emergency Services  – Surprise billing protections⁴  apply to most emergency services, including those provided in hospital emergency rooms, freestanding emergency departments, and urgent care centers that are licensed to provide emergency care. The federal law also applies to air ambulance transportation (emergency and non-emergency), but not ground ambulance.⁵   Emergency care includes screening and stabilizing treatment sought by patients who believe they are experiencing a medical emergency or active labor.

The federal government estimates there are 39.7 million emergency visits annually by patients with private job-based or individually purchased insurance, and of these 18% (or about 7.1 million visits) will involve at least one out-of-network claim.

Post-emergency stabilization services – The NSA defines emergency services to also include post-stabilization services provided in a hospital following an emergency visit. Post-stabilization care is considered emergency care until a physician determines the patient can travel safely to another in-network facility using non-medical transport, that such a facility is available and will accept the transfer, and that the transfer will not cause the patient other unreasonable burdens. The NSA also requires patients must receive written notice and give written consent to be transferred.⁶  The federal government estimates each year 4.1 million emergency department visits result in a hospital admission, and that 16% (or about 660,000) of these admissions will involve at least one out-of-network claim.

Non-emergency services provided at in-network facilities – Finally, the NSA covers non-emergency services provided by out-of-network providers at in-network hospitals and other facilities. Often, the doctors who work in hospitals don’t work for the hospital; instead they bill independently and do not necessarily participate in the same health plan networks.  The federal government estimates that 16% of 11.1 million (or about 1.8 million) in-network non-emergency facility stays for privately insured patients each year involve at least one out-of-network claim.

The regulation broadly defines covered non-emergency services to include treatment, equipment and devices, telemedicine services, imaging and lab services, and preoperative and postoperative services, regardless of whether those services are provided within the facility itself.

Doctors and hospitals must not bill patients more than the in-network cost sharing amount for surprise bills

For services covered by the NSA, providers are prohibited from billing patients more than the applicable in-network cost sharing amount; a penalty of up to $10,000 for each violation can apply.

Today, many out-of-network doctors and hospitals bill patients directly for their full, undiscounted fee, leaving to patients to submit the out-of-network claim to their insurance and collect what reimbursement they can. That common billing practice will change starting next year. Providers will need to first find out the patient’s insurance status and then submit the surprise out-of-network bill directly to the health plan. Providers are “encouraged” to include information about whether NSA protections apply on the claim itself (including, whether the patient has consented to waiver her balance billing protections, described below.)  Health plans must respond within 30 days, advising the provider of the applicable in-network cost sharing amount for that claim; cost-sharing generally will be based on the median in-network rate the plan pays for the service.⁷  The health plan will send an initial payment to the provider and send the consumer a notice (called an explanation of benefits, or EOB) that it has processed the claim and indicating the in-network cost sharing amount the patient owes the out-of-network provider. Only at this point is the out-of-network provider allowed to send the patient a bill for no more than the in-network cost sharing amount.

How will consumers know if a bill or claim constitutes a surprise medical bill? – It is up to both providers and health plans to identify bills that are protected under the NSA. The regulations also request public comment on whether changes to federal rules governing electronic claims (so-called HIPAA standard claims transactions) are needed to indicate claims for which surprise billing protections apply.⁸ 

Providers and plans also must notify consumers of their surprise medical bill protections. Providers and facilities must post a one-page disclosure notice summarizing NSA surprise billing protections on a public website and give this disclosure to each patient for whom they provide NSA-covered services.  (Appendix 1) This notice must be provided no later than the date when payment is requested, though the regulation specifies it is not required to be included with the bill, itself. Health plans are also required to provide consumers the disclosure notice with every EOB that includes a claim for surprise medical bills.

If a health plan or provider (or both) fail to properly identify a surprise bill, it will be up to the patient to recognize that NSA protections should apply and seek relief.

Some providers can ask consumers to waive rights

An exception to federal surprise billing protections is allowed if patients give prior written consent to waive their rights under the NSA and be billed more by out-of-network providers.  Providers are never allowed to ask patients to waive their rights for emergency services or for certain other non-emergency services or situations described above. Consent must be given voluntarily and cannot be coerced, although providers can refuse care if consent is denied.

Federal regulations provide for a standard waiver consent form, improbably titled the “Surprise Billing Protection Form,” (Appendix 2) that must include key information, including

• a statement that the patient is not required to waive protections, and can try to find an in-network provider/facility instead (for post stabilization care, the notice must indicate the name of available in-network providers)
• a statement that the out-of-network provider/facility can refuse to treat if the patient refuses to waive surprise billing protections
• a statement that waiving protections could cost the patient more money in out-of-network charges
• a description of the out-of-network services to be provided, along with billing codes and a good faith (nonbinding) estimate of costs the patient may owe

The law requires that consent must be given at least 72-hours in advance or, if the patient schedules a service less than 72-hours in advance, no later than the day the appointment is made. For same-day scheduled services, regulations permit consent to be given at least 3 hours in advance. It is possible, for example, that an out-of-network doctor could ask an already-hospitalized patient in the morning to waive her NSA protections for a service the doctor schedules to be given later that afternoon.

Providers should not seek consent to waive protections from patients who are impaired or otherwise limited in their ability to make informed decisions.  The waiver form must also be provided in the 15 most common languages in the geographic region where consent is sought; and if the patient’s own language is not among those, qualified interpreter services must be provided. The patient’s signature is required to give consent; no provider signature is required. Consent can be revoked prior to services being provided. The out-of-network provider or facility is required to notify the health plan that patient consent to waive balance billing protections for the claim(s) was appropriately given.

The Departments express the view that consent to waive NSA protections should be obtained only in limited circumstances – where the patient knowingly and purposefully seeks care from an out-of-network provider – and not to circumvent the law’s consumer protections. Even so, the regulation estimates that consumers will give consent to waive NSA protections in 50% of post-stabilization claims and for 95% of non-emergency services provided at in-network facilities. The regulations do not require any data reporting to regulators on the number of consent waivers given or for what services or providers. Agencies asked for comment on whether further limits on the notice-and-consent waivers are advisable.

Some state laws either do not allow waiver of protections or requiring greater advanced notice.

How will enforcement work?

For consumers to be protected, both the health plan and the surprise billing provider will need to comply with the law. If problems arise, consumers might need to seek help from more than one enforcing agency. And, though the NSA is a federal law, states will also have a role in enforcement.

Enforcement against health plans and insurers – The federal government has exclusive enforcement responsibility for most private health plans, though different federal agencies may be involved. States will lead enforcement for state-regulated plans.

• Most Americans under age 65 are covered by private employer-sponsored health plans, with nearly 2/3 of covered workers in self-insured plans that states are preempted from regulating. Enforcement authority over private self-insured employer-sponsored group plans rests with the U.S. Department of Labor (DOL) and Department of Treasury. Fully-insured group plans will be primarily regulated by states
• For fully insured group health plans and individual health insurance, states have primary enforcement authority, with federal fallback enforcement by HHS triggered when states do not substantially enforce. Any information (e.g., complaints, news stories) can serve as the basis for HHS investigating state enforcement.
• For self-insured plans sponsored by non-federal public employers, the U.S. Department of Health and Human Services (HHS) has primary enforcement authority. Agencies estimate 3 million people are enrolled in these plans.
• For the Federal Employees Health Benefits Program (FEHBP), enforcement authority rests with the U.S. Office of Personnel Management (OPM). The FEHBP is the largest employer-sponsored group health plan, coving nearly 9 million federal employees, annuitants and family members.

The NSA requires DOL to conduct audits of claims data from up to 25 group health plans annually to monitor employer-sponsored plan compliance with the NSA and to report to Congress annually on audit findings. HHS also will conduct up to 9 audits annually of compliance by state and local government employer plans and other issuers in states that are not substantially enforcing the NSA. These annual audits will focus primarily on whether plans are following the methodology for calculating QPAs.⁹ 

Enforcement against providers – States have a primary role in enforcing NSA rules against health providers, with federal enforcement as back up. This is true even when the consumer is covered by a federally-regulated health plan. It is yet to be determined which agency(ies) in each state will enforce NSA provider requirements, for example, the attorney general, department of health, hospital commission, or medical licensing boards. In addition, to “proactively identify and address issues of noncompliance,” HHS has proposed that it will conduct on average 200 random or targeted investigations per month into potential violations of NSA requirements by providers, starting in 2022.

Federal vs. state enforcement – This fall, the federal government surveyed states to learn about their authority and intention to enforce each of the major provisions under the NSA. The survey asked states if they will elect or decline to assume enforcement authority on a provision-by-provision basis. States can also enter into a collaborative enforcement agreement with the federal government, under which the state would seek voluntary compliance from health plans or providers and, when it cannot obtain that, refer cases to the federal government for enforcement action. Many states have already enacted some surprise billing protections for consumers in state-regulated plans. Depending on limits of their laws and authority, it is possible some states might decline to enforce NSA protections for certain services (e.g., post-stabilization) or for certain types of health plans (e.g., PPOs vs. HMOs), or with respect to certain providers (e.g., air ambulance). In addition, state laws may be more protective than the NSA in certain respects (for example, a state law might apply to ground ambulance services) in which case a state would enforce its own stronger protections, at least with respect to state-regulated health plans.

It is expected that HHS will make survey results public or otherwise publish a directory of applicable state and federal enforcement agencies. Health plans and providers must give consumers a disclosure notice summarizing protections under the NSA and state laws, and this must include the name and contact information for applicable enforcement agencies. (Appendix 1)

If problems do arise, it is conceivable that a patient might need the help of multiple agencies – federal, state, or both. For example:

• If a US DOL-regulated group health plan incorrectly denies a claim for an out-of-network service to which the NSA applies, and as a result, if the provider then incorrectly bills the patient for the entire charge, the consumer might need to rely on US DOL to enforce against the group health plan and on a state agency to enforce against the provider.
• If a patient requires post-stabilization care following an emergency visit and her state surprise billing law covers emergency services only, she might need to rely on the state to enforce protections for the emergency claims and on the federal government for claims involving the post-stabilization care.
• If a patient receives an out-of-network emergency surprise bill while traveling in another state, he might need to request help from the federal government if his home state, which would otherwise enforce NSA rules on providers, declines to enforce against out-of-state providers.

What can consumers do in case of problems?

Health plans, providers and facilities will most likely work in good faith to comply with NSA requirements. Even if compliance rates are high, with 10 million surprise medical bills annually, hundreds of thousands of problems could nonetheless arise. In such cases, it could fall to the consumer to recognize when surprise billing protections should apply and to seek help.

Consumers can appeal health plan denials – NSA gives consumers the right to appeal health plan decisions to incorrectly deny or apply out-of-network cost sharing to surprise medical bills, first to the health plan, and then, if the plan upholds its decision, to an independent external reviewer. NSA interim final regulations added surprise bills to the scope of claims eligible for external appeal, which is otherwise limited to only denials based on medical necessity. NSA regulations made no other changes to current federal standards and processes that can limit consumer access to external appeal, including those that:

• require the health plan to determine which claims are eligible for external appeal
• require employer-sponsored health plans to contract with the external reviewer
• limit access to denial notices in another language for consumers with limited English proficiency

Federal appeals standards apply to most private health plans sponsored by employers, although in some states appeal rights are stronger for consumers in state-regulated health insurance.

Beyond these limitations, appeal rights may not help in many cases because consumers rarely appeal adverse determinations by their health plans. Data reported by qualified health plans sold on HealthCare.gov show less than 2/10 of 1% of denied claims are appealed internally to the health plan, and less than 3% of those appeals make it to external review. There is no reporting requirement specific to surprise medical bill claims and appeals for QHPs, and at present, federal law requirements on employer-sponsored health plans to report data on denied claims have never been implemented.

Consumers can contact “the applicable enforcement entity” when providers incorrectly bill – Providers are required to give consumers written notice describing their federal protections each time they provide a service protected under the NSA. The notice must include contact information for the applicable federal and state enforcement entities; although a provider that inappropriately balance bills for a service subject to the NSA might also fail to provide the required disclosure notice.

A national consumer complaints system will be established – The NSA requires HHS to establish a national complaints system for surprise medical bills, which is currently under development and scheduled to go live on January 1, 2022.

The toll free number for the “No Surprises Help Desk” will be 1-800-985-3059.

A central, no-wrong-door system is contemplated where consumers can register complaints regarding suspected violations by providers and facilities. The HHS system will also accept complaints related to suspected violations by health plans.  It will coordinate with complaints systems operated by US DOL for group health plans and by OPM for the federal employee health plan and with state insurance regulators. Federal agencies are contemplating requirements to include contact information for the national Help Desk on other key documents, such as health plan EOBs, provider bills, or consent waiver forms.

The interim final regulations say HHS will respond to filed complaints within 12 weeks (60 business days), though agency staff have indicated that consumers will receive real-time confirmation when a complaint is filed.  Agency staff also indicate plans to conduct preliminary review of complaints within 3 to 5 days of receipt to determine any additional information that may be needed to process the complaint. Once processed, HHS will refer the consumer to another Federal or State regulatory agency to investigate or, if applicable, inform the complainant of action HHS has taken to resolve the problem or refer the matter for enforcement. It is still to be determined whether HHS will track the outcome of complaints it refers to other agencies, or whether or how HHS will use the complaint system to track compliance by plans and providers or enforcement activities of states. HHS estimates the system will receive 3,600 provider-related complaints annually; it will cost an estimated $16 million to build the online complaints system and ongoing operating costs of $10 million annually.

Consumers can contact their state Consumer Assistance Program (CAP) – The Affordable Care Act (ACA) provided for the establishment of state ombudsman programs or CAPs to educate privately insured consumers about their health coverage and rights and to help consumers resolve problems with health plans, including filing appeals. Forty CAPs were established in 2010, though no federal CAP funding has since been appropriated. Most remain in operation today, at least at reduced levels, and help patients with medical bill problems, including surprise medical bills.  Other legislation pending in Congress – the Build Back Better Act and the FY 2022 Labor-HHS appropriations bill – together could provide $75 million in new funding for CAPs in 2022, enabling states to establish new or expand existing programs. In addition to helping individual consumers resolve problems, CAPs are required to report to HHS on the kinds of problems consumers encounter. This data can inform oversight, as well as policy changes that can prevent problems from happening again.  CMS staff indicate that the national surprise medical bill complaints system will also be able to refer complainants to the CAP in their state for local assistance.¹⁰ 

How will payments for surprise bills be determined?

The amount paid for surprise out-of-network surprise bills will likely end up close to the median rate that plans pay in-network providers in a geographic area, also known as the qualifying payment amount, or QPA.¹¹   Under the law, the patient’s cost sharing for a surprise medical bill must be based on the QPA.  Health plans and providers can negotiate privately over the amount to be paid for the surprise bill, and if they can’t agree, either party can ask for an Independent Dispute Resolution (IDR) process to decide the payment amount. However, there are strong incentives for both plans and providers to either rely on the QPA or on private negotiations.

The federal IDR process will be conducted by certified entities chosen by HHS and will resemble so-called baseball-style arbitration.^12 ,13  The plan and provider will each submit their best offer for the out-of-network payment amount for a claim.  The IDR entity begins with the presumption that the QPA is the correct amount but can consider other factors, including patient acuity, the level of training and expertise of the treating provider, the market shares of both parties, and past good faith efforts of both parties to reach a network agreement. The IDR entity then chooses the offer it determines to be most appropriate, which becomes the out-of-network payment for that bill. The IDR will charge a fee for each arbitration and the losing party must pay that fee. (IDR fees can range from $200 to $500 for a single case, and $268 to $670 for multiple or “batch” determinations.)¹⁴ 

In light of this process and incentives, HHS estimates the IDR process will be invoked for just over 17,300 surprise medical bill claims per year, and for another roughly 4,900 surprise air ambulance bills per year. The Congressional Budget Office also estimates this process will tend to have a dampening effect on the cost of surprise bills; CBO estimates the NSA will reduce private health plan premiums by 0.5% to 1% on average, and reduce the federal deficit by $17 billion over 10 years.  Studies have found that surprise medical bills otherwise increase overall health insurance costs because the ability to balance bill gives certain providers and facilities leverage to negotiate much higher prices with insurers. To the extent that NSA moderates that dynamic, it can reduce health plan costs overall in addition to reducing out-of-pocket costs for individual patients.

Organizations representing providers and air ambulance companies have objected, however, and filed lawsuits urging that regulations should not have created a ‘rebuttable presumption’ in favor of the QPA. It remains to be seen if these actions may result in delayed implementation of the NSA or in changes to regulatory standards and procedures that could result in greater use of the IDR process or the determination of higher out-of-network payments.

The regulations also require detailed monthly reporting to HHS by IDR entities on the cases they receive. Data required to be sent to HHS includes specific information on the parties involved in each arbitration – including their names, market share, and other characteristic – and on the services involved – including the dollar amounts offered by each party, also expressed as a percentage of the QPA. HHS will compile data into quarterly reports that will be publicly available. These reports could provide an additional degree of transparency around surprise medical bills and the characteristics of plans and providers involved in surprise billing disputes.

Discussion

The No Surprises Act creates important new federal protections against surprise medical bills – a leading cause of affordability concerns for consumers. That this law passed with strong bipartisan support is an indication of the need for these protections. That federal agencies moved swiftly to implement the new law signals intent to make it work as effectively as possible.

The law is highly complex, however, setting coverage and billing standards for a specific subset of private insurance claims that could number 10 million annually. Providers are permitted to ask consumers to waive their NSA protections in some cases. Oversight and enforcement will be conducted by an array of federal and state agencies, some of which are still to be determined, and more than one of which could be involved in any given case of noncompliance.

Monitoring of the law’s impact, as well as compliance, will be accomplished in various ways.  Data reporting by IDR entities will provide some information about prices for surprise bills and the characteristics of plans and providers using the IDR process. Annual health plan audits conducted by federal agencies can also yield information about prices charged and paid for surprise bills. Other targeted audits and investigations can yield information about compliance generally, as can new federal consumer complaints systems. State systems may also yield important data as to how the law is working, such as state complaints systems and analysis of data from all-payer-claims databases. It remains to be seen how these new systems will work, independently and in coordination.

To a large extent, oversight and enforcement will rely on complaints. In order to complain, though, consumers will need to understand that they should not be overbilled for emergency services or for non-emergency out-of-network services while they are in in-network hospitals and facilities.  How public education will be conducted, and how public understanding of new rights will be monitored is yet to be determined. The responsiveness of new complaints systems and how they coordinate will also be important to watch.

Finally, it remains to be seen if any other tools will be employed to monitor trends in the incidence of surprise medical bills, and how effectively the law may work to protect consumers from surprise bills and reduce their out-of-pocket costs. For example, might the federal government exercise its broad authority under the ACA to require transparency data reporting by private health plans? This authority could be used to monitor the incidence of surprise medical bills over time, as well as differences between the QPA and billed or paid out-of-network charges; it could also be used to monitor how frequently providers use consent waivers. Or, will state consumer assistance programs be employed to play a role in educating the public, reporting to regulators on problems that arise and how they might be prevented in the future?

As implementation proceeds (and as federal courts consider legal challenges to the regulations) it is also possible that NSA standards and procedures will be modified further.

Appendix 1: Disclosure Notice Summarizing NSA Protections

Federal regulations include this one-page model notice (two-sided) that health plans and providers are required to give to patients notifying them of their rights under the federal No Surprises Act.  This model notice has been revised for 2023.

Your Rights and Protections Against Surprise Medical Bills

What is “balance billing” (sometimes called “surprise billing”)?

When you see a doctor or other health care provider, you may owe certain out-of-pocket costs, such as a copayment, coinsurance, and/or a deductible. You may have other costs or have to pay the entire bill if you see a provider or visit a health care facility that isn’t in your health plan’s network.

“Out-of-network” describes providers and facilities that haven’t signed a contract with your health plan. Out-of-network providers may be permitted to bill you for the difference between what your plan agreed to pay and the full amount charged for a service. This is called “balance billing.” This amount is likely more than in-network costs for the same service and might not count toward your annual out-of-pocket limit.

“Surprise billing” is an unexpected balance bill. This can happen when you can’t control who is involved in your care—like when you have an emergency or when you schedule a visit at an in-network facility but are unexpectedly treated by an out-of-network provider.

You are protected from balance billing for:

Emergency services

If you have an emergency medical condition and get emergency services from an out-of-network provider or facility, the most the provider or facility may bill you is your plan’s in-network cost-sharing amount (such as copayments and coinsurance). You can’t be balance billed for these emergency services. This includes services you may get after you’re in stable condition, unless you give written consent and give up your protections not to be balanced billed for these post-stabilization services.

[Insert plain language summary of any applicable state balance billing laws or requirements OR state-developed model language as appropriate]

Certain services at an in-network hospital or ambulatory surgical center

When you get services from an in-network hospital or ambulatory surgical center, certain providers there may be out-of-network. In these cases, the most those providers may bill you is your plan’s in-network cost-sharing amount. This applies to emergency medicine, anesthesia, pathology, radiology, laboratory, neonatology, assistant surgeon, hospitalist, or intensivist services. These providers can’t balance bill you and may not ask you to give up your protections not to be balance billed.

If you get other services at these in-network facilities, out-of-network providers can’t balance bill you, unless you give written consent and give up your protections.

You’re never required to give up your protections from balance billing. You also aren’t required to get care out-of-network. You can choose a provider or facility in your plan’s network.

[Insert plain language summary of any applicable state balance billing laws or requirements OR state-developed model language regarding applicable state law requirements as appropriate]

When balance billing isn’t allowed, you also have the following protections:

• You are only responsible for paying your share of the cost (like the copayments, coinsurance, and deductibles that you would pay if the provider or facility was in-network). Your health plan will pay out-of-network providers and facilities directly.
• Your health plan generally must:
  • Cover emergency services without requiring you to get approval for services in advance (prior authorization).
  • Cover emergency services by out-of-network providers.
  • Base what you owe the provider or facility (cost-sharing) on what it would pay an in-network provider or facility and show that amount in your explanation of benefits.
  • Count any amount you pay for emergency services or out-of-network services toward your deductible and out-of-pocket limit.

If you believe you’ve been wrongly billed, you may contact [applicable contact information for entity responsible for enforcing the federal and/or state balance or surprise billing protection laws].

Visit [website] for more information about your rights under federal law.

[If applicable, insert: Visit [website] for more information about your rights under [state laws].]

Appendix 2:  Standard Consent Form to Waive Protections

Federal regulations include this standard consent form that providers and facilities must use to ask patients to waive their balance billing protections under the No Surprises Act.  This standard form could change in the future pursuant to public comments.

Surprise Billing Protection Form

The purpose of this document is to let you know about your protections from unexpected medical bills. It also asks whether you would like to give up those protections and pay more for out-of-network care.

---

You’re getting this notice because this provider or facility isn’t in your health plan’s network. This means the provider or facility doesn’t have an agreement with your plan.

Getting care from this provider or facility could cost you more.

If your plan covers the item or service you’re getting, federal law protects you from higher bills:

• When you get emergency care from out-of-network providers and facilities, or
• When an out-of-network provider treats you at an in-network hospital or ambulatory surgical center without your knowledge or consent.

Ask your health care provider or patient advocate if you need help knowing if these protections apply to you.

If you sign this form, you may pay more because:

• You are giving up your protections under the law.
• You may owe the full costs billed for items and services received.
• Your health plan might not count any of the amount you pay towards your deductible and out-of-pocket limit. Contact your health plan for more information.

You shouldn’t sign this form if you didn’t have a choice of providers when receiving care. For example, if a doctor was assigned to you with no opportunity to make a change.

Before deciding whether to sign this form, you can contact your health plan to find an in-network provider or facility. If there isn’t one, your health plan might work out an agreement with this provider or facility, or another one.

See the next page for your cost estimate.

Estimate of what you could pay

Patient name:___________________________________________________________________________________________

Out-of-network provider(s)or facility name: __________________________________________________________

_____________________________________________________________________________________________________________________

►Review your detailed estimate. See Page 4 for a cost estimate for each item or service you’ll get.

►Call your health plan. Your plan may have better information about how much you will be asked to pay. You also can ask about what’s covered under your plan and your provider options.

►Questions about this notice and estimate? Call [Enter contact information for a representative of the provider or facility to explain the documents and estimates to the individual, and answer any questions, as necessary.]

►Questions about your rights? Contact [contact information for appropriate federal or state agency]

Prior authorization or other care management limitations

[Enter either (1) specific information about prior authorization or other care management limitations that are or may be required by the individual’s health plan or coverage, and the implications of those limitations for the individual’s ability to receive coverage for those items or services, or (2) include the following general statement:

Except in an emergency, your health plan may require prior authorization (or other limitations) for certain items and services. This means you may need your plan’s approval that it will cover an item or service before you get them. If prior authorization is required, ask your health plan about what information is necessary to get coverage.]

[In the case where this notice is being provided for post-stabilization services by a nonparticipating provider within a participating emergency facility, include the language immediately below and enter a list of any participating providers at the facility that are able to furnish the items or services described in this notice]

Understanding your options

You can also get the items or services described in this notice from these providers who are in-network with your health plan:

More information about your rights and protections

Visit [website] for more information about your rights under federal law.

By signing, I give up my federal consumer protections and agree to pay more for out-of-network care.

With my signature, I am saying that I agree to get the items or services from (select all that apply):

☐ [doctor’s or provider’s name] [If consent is for multiple doctors or providers, provide a separate check box for each doctor or provider]

☐ [facility name]

With my signature, I acknowledge that I am consenting of my own free will and am not being coerced or pressured. I also understand that:

• I’m giving up some consumer billing protections under federal law.
• I may get a bill for the full charges for these items and services, or have to pay out-of-network cost-sharing under my health plan.
• I was given a written notice on [enter date of notice] explaining that my provider or facility isn’t in my health plan’s network, the estimated cost of services, and what I may owe if I agree to be treated by this provider or facility.
• I got the notice either on paper or electronically, consistent with my choice.
• I fully and completely understand that some or all amounts I pay might not count toward my health plan’s deductible or out-of-pocket limit.
• I can end this agreement by notifying the provider or facility in writing before getting services.

IMPORTANT: You don’t have to sign this form. But if you don’t sign, this provider or facility might not treat you. You can choose to get care from a provider or facility in your health plan’s network.

_________________________________________________ or _________________________________________________

Patient’s signature                                                           Guardian/authorized representative’s signature

_________________________________________________     _________________________________________________

Print name of patient                                                     Print name of guardian/authorized representative

____________________________                                            ____________________________

Date and time of signature                                            Date and time of signature

 

Take a picture and/or keep a copy of this form.

It contains important information about your rights and protections.

More details about your estimate

 

Patient name:___________________________________________________________________________________________

Out-of-network provider(s)or facility name: __________________________________________________________

_____________________________________________________________________________________________________________________

The amount below is only an estimate; it isn’t an offer or contract for services. This estimate shows the full estimated costs of the items or services listed. It doesn’t include any information about what your health plan may cover. This means that the final cost of services may be different than this estimate.

Contact your health plan to find out how much, if any, your plan will pay and how much you may have to pay.

[Enter the good faith estimated cost for the items and services that would be furnished by the listed provider or facility plus the cost of any items or services reasonably expected to be provided in conjunction with such items or services. Assume no coverage would be provided for any of the items and services.]

[Populate the table below with each item and service, date of service, and estimated cost. Add additional rows if necessary. The total amount on page 2 must be equal to the total of each of the cost estimates included in the table.]

1. Balance bill refers to the difference between the full undiscounted charge and the amount the health plan recognizes as reasonable. Studies have found the average balance billing charge for surprise bills was over $1,200 for anesthesia, $2,600 for surgical assistants, and $750 for childbirth. ↩︎
2. The No Surprises Act does not apply to Medicare or Medicaid, public programs that already strictly limit or prohibit balance billing by nonparticipating providers. ↩︎
3. “Interim final” means the regulations take effect, but public comment is requested and future amendments are possible. ↩︎
4. In addition to surprise billing protections, the No Surprises Act sets other standards for private health plan coverage of emergency care. For example, health plans will be prohibited from denying claims for emergency care simply because the patient turned out to not be experiencing a medical emergency (for example, if a patient sought emergency care for chest pain that turned out to be caused by indigestion instead of a heart attack). ↩︎
5. The law establishes an advisory committee to make recommendations on whether and how Congress might apply federal surprise medical bill protections for ground ambulance services. Meanwhile ten states do provide surprise medical bill protections for ground ambulance services. ↩︎
6. The consent form is shown at Appendix 2.  The form is not required to include information stating that the patient is medically able to be transferred nor does it require a signature by the medical professional certifying the patient’s condition. ↩︎
7. In states with an all-payer rate setting system or other state law determining payment rates for surprise medical bills, patient cost sharing could be based on the state-determined amount. ↩︎
8. For example, as part of implementation of its surprise bill law, the state of Washington requires insurers to include a standardized transaction code on all claims subject to that state’s balance billing law in order to notify providers that state law applies to the claim; Washington also requires a standard code must be included on EOBs to notify consumers that a claim is subject to state law balance billing protections. ↩︎
9. In addition to the statutorily required numbers of health plan audits, DOL and HHS can undertake any number of additional investigations or audits in response to complaints. ↩︎
10. CMS staff comments offered during meeting with consumer advocates on NSA implementation, November 30, 2021. ↩︎
11. In states with an all-payer rate setting system or other state law determining payment rates for surprise medical bills, the QPA could be the state-determined amount. ↩︎
12. HHS is currently taking applications from entities to be certified IDRs and expects to certify 50 entities. States with their own surprise medical bill laws can apply a different state-designed IDR process to resolve payment disputes involving state-regulated plans.  Currently, several states also allow plans they don’t regulate (self-insured employer plans) to elect to use the state IDR process if they prefer. ↩︎
13. The No Surprises Act also establishes a payment dispute resolution process for providers and uninsured (or self-pay) patients.  Under the law, uninsured patients have the right to request a good faith estimate of the cost of care they seek; if the actual amount charge is significantly in excess of the estimated amount (by at least $400), the patient can ask an IDR entity selected by HHS – the selected dispute resolution, or SDR entity – to review the charges and determine whether they should be reduced.  In the regulations HHS estimates about 3.5 million uninsured or self-pay individuals will receive good faith cost estimates annually, and the SDR will be asked to review 26,659 cases annually. ↩︎
14. In addition each party pays a $50 administrative fee to use the IDR process. ↩︎

Key Takeaways

Behavioral health conditions—including mental illnesses and substance use disorder (SUD)—are  especially common among Medicaid enrollees and have worsened during the COVID-19 pandemic. Efforts to address these issues have been a focus in Medicaid at the federal level, including in the 2018 SUPPORT Act and more recently in the 2021 American Rescue Plan Act (ARPA), which provided enhanced Medicaid funding for certain behavioral health providers and mobile crisis services. The proposed Build Back Better Act (BBBA) passed by the House of Representatives on November 19, 2021 would build on both ARPA provisions and also expand funding for community mental health services. Also, CMS under the Biden Administration has identified behavioral health policy and investments as a key federal Medicaid priority.

States are taking advantage of new federal policy options to address behavioral health issues in Medicaid and are also developing other initiatives to improve mental health and substance use outcomes. Outside of Medicaid, other state agencies may also take steps to address behavioral health outcomes, sometimes including Medicaid populations but often broader. On KFF’s 21^st annual Medicaid budget survey, all responding states reported at least one initiative to expand behavioral health care in Medicaid in state fiscal year (FY) 2021 and/or 2022,¹  including crisis service and other benefit expansions, initiatives to expand telehealth and address equity, and managed care changes. This brief summarizes data from this survey, with key findings including:

• More than half of states reported plans to take up the new ARPA community-based mobile crisis intervention service option and about two-thirds reported another crisis service initiative. States are also expanding a wide range of other Medicaid behavioral health services such as screening.
• Many states expanded telehealth to increase access to care during the COVID-19 pandemic, and as of July 1, 2021, nearly all states covered telehealth delivery of behavioral health services. Many states plan to continue this coverage post-pandemic. States also reported other access-related behavioral health initiatives including to address disparities and to promote co-location.
• Most states continue to rely on managed care organizations (MCOs) to deliver behavioral health services. Most allow MCOs to use “in lieu” of authority to cover certain behavioral health services, particularly to allow coverage of services provided in institutions for mental disease (IMDs).² 

Some states reported behavioral health initiatives across many areas, often as part of wide-ranging statewide initiatives identified as top priorities for their Medicaid programs—examples include California, Colorado, Massachusetts, Montana, and Washington. Looking ahead, more than one-third of responding states mentioned behavioral health initiatives as a future priority, and several identified behavioral health services as an upward spending pressure in FY 2022. Continued efforts at the federal level may affect the level of enhanced Medicaid funding available to states for expanded behavioral health services. Additionally, it is unclear how behavioral health service patterns may change in the aftermath of the COVID-19 pandemic and whether or how states may modify or adopt new initiatives in this area.

Introduction

Medicaid plays a key role in covering and financing behavioral health care: in 2020, Medicaid covered 23% of nonelderly adults with mental illness, 26% of nonelderly adults with serious mental illness (SMI), and 22% of nonelderly adults with SUD; in comparison, Medicaid covered 18% of the general nonelderly adult population (see Appendix A).³  The COVID-19 pandemic and resulting economic recession have negatively affected mental health and substance use outcomes and exacerbated barriers to care.

Efforts to address the opioid epidemic and broader behavioral health issues have been a focus in Medicaid in recent years, including through federal legislation such as the 2018 SUPPORT Act. More recently, ARPA provided enhanced Medicaid funding that could be used to support behavioral health home and community-based services (HCBS) providers and to provide community-based mobile crisis intervention services; the proposed BBBA (passed by the House of Representatives on November 19, 2021) would build on both of these options. The BBBA would also expand funding for a community mental health services Medicaid demonstration program for states to implement Certified Community Behavioral Health Clinics.

This brief draws on data from KFF’s 21^st annual Medicaid budget survey⁴  to assess how states are using new federal policy options and implementing other innovative behavioral health initiatives. We focus on efforts to expand behavioral health benefits, improve access to behavioral health care and equity, and leverage MCOs to deliver behavioral health benefits.

How are states expanding behavioral health benefits?

Federal law mandates Medicaid coverage of many behavioral health benefits, and states may also cover additional optional behavioral health benefits. Behavioral health services for children are particularly comprehensive due to Medicaid’s Early, Periodic Screening, Diagnosis, and Treatment (EPSDT) benefit for children (see Appendix A). In the years prior to the COVID-19 pandemic, states were increasingly expanding optional behavioral health benefits and taking advantage of federal options in the SUPPORT Act. Adverse effects of the COVID-19 pandemic on mental health and substance use outcomes have brought further focus to behavioral health issues and prompted the Substance Abuse and Mental Health Services Administration (SAMHSA) to issue multiple COVID-19 grants, available to state agencies to address mental health and SUD outcomes. Other recent federal policy options more directly target Medicaid, such as ARPA’s expansion of mobile crisis response services, which aim to connect Medicaid enrollees experiencing mental health crises to appropriate community-based care (an option which the proposed BBBA would make permanent).

At the time of survey completion, more than half of states indicated they will or probably will take up the new option under ARPA to provide community-based mobile crisis intervention services. ARPA provides 85% federal matching funds for these crisis intervention services for the first three years, with these additional funds to supplement, not supplant, the level of state spending for these services. The ARPA model dispatches multidisciplinary mobile crisis teams to provide Medicaid-covered services to enrollees experiencing a mental health or SUD crisis outside a hospital or other facility setting. These mobile crisis services generally do not have to be offered statewide and can be targeted to specific groups of enrollees (rather than be available to all Medicaid enrollees). States may limit enrollees’ choice of provider for these services. Under ARPA, this new option is available to states for five years, beginning April 1, 2022; however, a provision in the proposed BBBA would make this option available permanently. ARPA also authorized $15 million for state planning grants; these were awarded to 20 states in September 2021 (however, under ARPA, all states are eligible to take up this option beginning April 1, 2022, including those that did not receive planning grants).

About two-thirds of responding states indicated they have other, non-ARPA-related crisis service initiatives in place in or planned for FY 2022. Some of these initiatives are limited to Medicaid enrollees and funding, but others have a broader focus. Commonly reported initiatives include mobile crisis response and service initiatives (separate from the ARPA option); crisis hotlines; and crisis diversion, stabilization, and/or receiving centers. Crisis hotlines include 988 hotlines, which were designated by the Federal Communication Commission as the new phone number to connect individuals with suicide prevention and mental health crisis counselors. One state (New Hampshire) is planning implementation of a Critical Time Intervention model to provide support to individuals with SMI during vulnerable periods of transition (e.g., discharge from a psychiatric hospital).

States are also expanding a wide range of Medicaid behavioral health services, some targeted to specific populations or needs (Figure 1). States reported service expansions across the care continuum, including institutional, intensive, outpatient, and home and community-based behavioral health services. Continued state focus on SUD benefit expansions is consistent with past years and aims to target the substance use crisis that has worsened during the COVID-19 pandemic. States reported approaches to targeting SUD including new or expanded residential/inpatient SUD benefits, coverage of opioid treatment programs, and enhanced care management.⁵  States are also implementing other targeted benefit expansions to address mental health and other needs that have been adversely affected by the COVID-19 pandemic, such as exposure to gun violence (addressed by a benefit expansion in Illinois). Overall, on the 2021 budget survey, 10 states reported new or expanded mental health and/or SUD benefits in FY 2021 and 14 states reported such expansions planned for FY 2022 (see Figure 1 for examples). These include expanded coverage of intensive outpatient services, clinic services, school-based services, and supportive employment services. Some behavioral health benefit expansions are targeted to specific populations such as children or pregnant/postpartum women.

More than four-fifths of states reported initiatives in place related to screening enrollees for behavioral health needs, in fee-for-service (FFS) and/or through MCO contract requirements. Behavioral health screenings are one strategy for Medicaid to connect individuals with behavioral health needs to the appropriate services. Most responding states that contract with MCOs (31 of 37) reported FY 2021 contract requirements related to behavioral health screening, and two MCO states reported plans to implement such requirements in FY 2022. About half of all responding states reported non-MCO initiatives related to behavioral health screening in FY 2021 and FY 2022.

What initiatives are states adopting to improve access to behavioral health care and equity?

The COVID-19 pandemic has created new barriers to care for people already experiencing behavioral health conditions and had disproportionate negative impacts on behavioral health outcomes for people of color. Telehealth—which was becoming more common in Medicaid programs prior to the pandemic—may  be an important component of facilitating access to behavioral health services for children and adults, especially during the pandemic, and ARPA included funding accordingly to support behavioral health professionals’ utilization of telehealth. States have broad flexibility to determine whether and how to cover services (including behavioral health) delivered via telehealth in their Medicaid programs.

As of July 1, 2021, all responding states cover audio-visual telehealth delivery of behavioral health services, and almost all also cover audio-only delivery of these services (Figure 2). All responding states (47) reported that they sometimes or always covered audio-visual delivery of FFS mental health and SUD services. Almost all reported covering audio-only delivery of FFS mental health (45 states) and SUD services (44 states). Nearly all MCO states reported requiring MCOs to cover the same services via telehealth as covered in FFS. Across service categories, most states are considering post-pandemic telehealth policies, with many weighing expanded access against quality concerns especially for audio-only telehealth. States were more likely to report plans to maintain audio-only coverage for mental health and SUD services compared to other, non-behavioral health services.

States report that telehealth helped maintain and expand access to behavioral health care during the pandemic. Thirty-one states (out of 45 responding) reported that telehealth, especially expanded audio-only coverage, had particular value in maintaining or improving access to behavioral health services. The survey also asked states to identify the top two or three categories of behavioral health services that had the highest telehealth utilization during FY 2021; states most frequently identified psychotherapy, counseling (for mental health conditions and/or SUD), and patient evaluations.

Eight states reported current or planned initiatives to address racial/ethnic disparities in behavioral health in Medicaid.⁶  Prior to the pandemic, Black and Hispanic people were less likely to receive needed behavioral health services compared to the general population, and during the pandemic, Black and Hispanic adults have been more likely to report symptoms of anxiety and/or depressive disorder. The recent uptick in substance use issues is also disproportionately affecting many people of color. Of the states that identified any initiatives addressing racial/ethnic health disparities, eight reported initiatives to specifically address disparities in behavioral health care and outcomes. These include managed care requirements and/or initiatives, efforts to improve data collection and stratification, and eligibility or benefit expansions that would address behavioral health disparities. For example:

• California’s value-based payment program directs MCOs to address health disparities by making enhanced payments that target SMI, SUD, and homelessness.
• Connecticut’s recent procurement for behavioral health Administrative Services Organization (ASO) services requires bidders to identify specific, actionable strategies to improve equity, with an emphasis on race and ethnicity.
• Since FY 2020, Michigan has used capitation withholds to incentivize reductions in racial disparities in behavioral health metrics.

Many states reported a need to improve data collection to enable identification of racial/ethnic health disparities, and future initiatives to address behavioral health disparities may emerge as data becomes better known.

Nearly half of states reported initiatives to promote physical and behavioral health co-location in place in or planned for FY 2022. Some of these initiatives are limited to Medicaid enrollees and funding, but others have a broader focus. Many individuals receiving care for behavioral health conditions also have physical health conditions that require medical attention, and the inverse is also true. One approach to address care fragmentation and better integrate physical and behavioral health care is co-location of both types of care at the same site. Reported initiatives were most frequently at Certified Community Behavioral Health Clinics (CCBHCs),⁷  community mental health centers (CMHCs), federally qualified health centers (FQHCs), and health homes. For example, state legislation in Kansas directs the state to establish a certified CCBHC model in FY 2022, which will encourage CMHCs to begin offering physical health services. Several states reported plans to cover new integrated care services, while others reported allowing for payment of a behavioral health encounter on the same day as a medical encounter and/or other administrative changes. A few states mentioned incentive payments for providers or MCOs who promote integrated care.

Other notable co-location initiatives in place or planned include:

• California is proposing to implement its CalAIM initiative in January 2022, which will integrate the administration and financing of specialty mental health and SUD services under a single state/county contract. The goal is to improve outcomes for enrollees through more coordinated treatment and to allow providers to respond in a more patient-centered way. Distinct from this behavioral health integration effort, CalAIM also includes a plan to test the full integration of physical health, behavioral health, and oral health under one contracted managed care entity.
• Missouri aims to increase co-location by expanding its care integration program—which currently involves collaboration between FQHCs and CMHCs—to include collaboration between FQHCs and SUD providers.
• New Hampshire is continuing to implement ProHealth Grants to work with three CMHCs and three FQHCs to develop integrated health homes for people ages 16 to 35. The goal of this program is to integrate FQHC services (such as screening, detection, and treatment of physical health conditions) within the CMHCs to improve and prevent future health conditions.

How are states using MCOs to deliver behavioral health services?

States use a combination of FFS and managed care arrangements to deliver behavioral health care to Medicaid beneficiaries, with these services increasingly being provided by MCOs in recent years (see Appendix A). Under federal Medicaid regulations, states may allow MCOs to offer services or settings that substitute for those that are covered under the state plan. These in lieu of services (ILOS) must be identified in the MCO contract and enrollees may not be required to use them.⁸  In recent years, states have increasingly used MCO “in lieu of” authority to cover services provided to nonelderly adults in “institutions for mental disease” (IMDs) that otherwise would be ineligible for federal Medicaid funding. The 2018 SUPPORT Act codified the existing Medicaid managed care regulation allowing capitation payments to include IMD services up to 15 days per month using “in lieu of” authority.

Most states continue to rely on MCOs to deliver inpatient and outpatient behavioral health services (Figure 3 and Appendix B). Although MCOs provide comprehensive services, states may carve specific services out of MCO contracts to FFS or limited benefit prepaid health plans (PHPs). Services frequently carved out include behavioral health, pharmacy, dental, and long-term services and supports (LTSS). However, there has been significant movement across states to carve these services in to MCO contracts. Consistent with results from past years, the majority of MCO states reported that specific behavioral health service types were always carved into their MCO contracts (i.e., virtually all services covered by the MCO); fewer states reported that services were always carved out (to PHP or FFS) or that carve-in status varies by geographic or other factors.⁹  Also, five states reported targeted carve-outs of behavioral health drugs, such as psychotropic medications, from MCO capitation payments (data not shown).

Eleven states reported making recent changes to how behavioral health benefits are delivered under MCO contracts: three states in FY 2021 only, four states in FY 2022 only, and four states in both FY 2021 and 2022. For example:

• California, through its CalAIM Section 1115 waiver initiative, reported a set of changes to streamline service delivery in both FY 2021 and FY 2022 to improve coordination of mental health care between Medi-Cal MCOs managing non-specialty mental health services and county-operated mental health PHPs managing specialty mental health services and SUD treatment.
• Ohio is implementing a specialized managed care entity—a prepaid inpatient health plan—responsible for providing behavioral health services, with limited exceptions, to youth with complex needs enrolled in both MCOs and FFS in FY 2022.
• West Virginia removed an MCO network requirement in FY 2021 that required MCOs to contract with all SUD providers; MCOs may now make contracting decisions based upon provider quality.

Most states allow MCOs to use “in lieu of” authority to cover certain behavioral health services, particularly to allow coverage of services provided in IMDs. Thirty¹⁰  of 37 responding MCO states indicated permitting at least one ILOS as of July 1, 2021; of these, more than three-quarters reported that the permitted ILOS included certain behavioral health services. By far, the most commonly cited ILOS was services provided to nonelderly adults in IMDs, which are otherwise ineligible for Medicaid funding except through in lieu of or waiver authority.¹¹  Some states also mentioned other approved behavioral health services (including mental health and SUD services). Finally, at least two states plan to add behavioral health ILOS in FY 2022.¹² 

Looking Ahead

Across the 2021 budget survey questions discussed in this brief, all responding states reported at least one initiative to expand access to behavioral health care in Medicaid. Some states reported initiatives across many areas, often as part of wide-ranging statewide initiatives identified as top priorities for their Medicaid program—examples include California’s CalAIM initiative, Colorado’s behavioral health care coordination efforts, Massachusetts’ Roadmap for Behavioral Health Reform, Montana’s pending HEART Section 1115 demonstration and parallel service additions, and Washington’s efforts to build an effective community behavioral health system. Further information is needed to understand in more detail how these reported behavioral health initiatives operate and the extent to which states are promoting referrals and treatment or receipt of other benefits following screenings.

Overall, more than one-third of responding states mentioned behavioral health initiatives as a priority for FY 2022 and beyond, and several identified behavioral health services as an upward spending pressure in FY 2022. This trend tracks with the Biden Administration’s identification of behavioral health policy and investments as a key federal Medicaid priority. Continued efforts at the federal level—including the proposed BBBA—may affect the level of enhanced Medicaid funding available to states and their take-up of expanded behavioral health services. For example, additional states may take up the ARPA mobile crisis services option if it becomes permanent under BBBA. The impact of the ARPA enhanced federal Medicaid funding for HCBS (beginning April 2022) on behavioral health HCBS providers also remains to be seen. Additionally, it is unclear how behavioral health service patterns—such as utilization of telehealth—may continue to evolve in the aftermath of the COVID-19 pandemic and whether or how states may modify or adopt new behavioral health initiatives. States also may pursue and CMS under the Biden administration may promote Section 1115 demonstration waivers to expand access to behavioral health care across the care continuum.

Appendix A

Background on Behavioral Health Services in Medicaid

Medicaid plays a key role in covering and financing care for people with behavioral health needs. Behavioral health conditions include mental illnesses, such as anxiety disorders, major depression, bipolar disorder, schizophrenia, and post-traumatic stress disorder, as well as SUD, such as opioid use disorder. In 2020, Medicaid covered 23% of nonelderly adults with mental illness, 26% of nonelderly adults with SMI, and 22% of nonelderly adults with SUD. In comparison, Medicaid covered 18% of the general nonelderly adult population. In total, approximately 10.3 million nonelderly adults with Medicaid had a mental illness and over 4.0 million had an SUD in 2020. More than 2.5 million of these adults had both a mental illness and an SUD.¹³  Medicaid expenditures for enrollees with behavioral health conditions are relatively high due to this group’s substantial health needs.

Most beneficiaries with behavioral health conditions qualify for Medicaid because of their low incomes. Alternatively, people with behavioral health needs, especially those with SMI, may also qualify for Medicaid based on having a disability. Generally, individuals who have a mental illness that makes them eligible for Supplemental Security Income (SSI), the federal cash assistance program for low-income aged, blind, or disabled individuals, are automatically eligible for Medicaid; states may also offer other disability-related Medicaid eligibility pathways to people whose incomes exceed the SSI limit. Finally, though most children with behavioral health diagnoses are eligible through the poverty pathway, some qualify through the child welfare assistance pathway because of their involvement with the foster care system, and others may qualify through a disability-related pathway.

Behavioral health services are not a specifically defined category of Medicaid benefits. Some behavioral health benefits fall under mandatory Medicaid benefit categories: for example, psychiatrist services may be covered under the “physician services” category. States also cover behavioral health benefits through optional benefit categories that they choose to include in their Medicaid programs, such as case management services, prescription drugs, and rehabilitative services. Medicaid MCOs and alternative benefit plans (ABPs)¹⁴  that cover behavioral health services must do so at parity, i.e. to the same extent and on the same terms that they cover physical health services. States are encouraged, but not required, to apply the parity rules to their traditional Medicaid FFS programs as well. Behavioral health services for children are particularly comprehensive due to Medicaid’s EPSDT benefit for children, which includes all medically necessary Medicaid services permitted under federal law and is required for children from birth to age 21. Children diagnosed with behavioral health conditions receive any service available under federal Medicaid law necessary to correct or ameliorate the condition, even if the state does not cover the service for adults.

Historically, Medicaid paid for services, including those for behavioral health conditions, on a FFS basis, through which providers are paid for each billable service they deliver. During the past several decades, Medicaid payment has shifted to managed care arrangements, through which providers are paid for some or all services at a prepaid rate. Behavioral health services are increasingly provided through managed care arrangements, but some states “carve out” behavioral health services from their MCO contracts.

Appendix B

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. “Mental disease” is an antiquated term used in the statute. It comprises “diseases listed as mental disorders in the International Classification of Diseases with the exception of mental retardation [sic], senility, and organic brain syndrome,” including the Diagnostic and Statistical Manual of Mental Disorders, and encompasses alcoholism and other chemical dependency syndromes. CMS State Medicaid Manual § 4309 (D), (E), https://www.cms.gov/Regulations-and-Guidance/guidance/Manuals/Paper-Based-Manuals-Items/CMS021927.html. ↩︎
3. KFF analysis of 2020 National Survey on Drug Use and Health (NSDUH). Estimates from the 2020 NSDUH should not be compared to prior years due to methodological changes. ↩︎
4. KFF’s 21st annual budget survey surveyed Medicaid officials in all 50 states and DC about certain policies in place in state fiscal year (FY) 2021 and policy changes implemented or planned for FY 2022, which began on July 1, 2021 for most states. 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. Delaware, Minnesota, New Mexico, and Rhode Island did not respond to the 2021 survey. In some instances, we used publicly available data or prior years’ survey responses to obtain information for these states. ↩︎
5. In addition to the SUD benefit expansions counted here, eight states (District of Columbia, Georgia, New Mexico, North Dakota, Oklahoma, Rhode Island, South Carolina, and Tennessee) reported new or expanded medication-assisted treatment (MAT) benefits in FY 2021. Federally required changes, such as coverage of MAT (including all FDA-approved drugs, counseling services, and behavioral therapy) as mandated by the SUPPORT Act, are not counted as positive or negative benefit changes for purposes of the budget survey. Future research may explore state experiences with these federally required MAT benefit expansions. ↩︎
6. The eight states are: California, Connecticut, Iowa, Massachusetts, Michigan, Montana, Nevada, and West Virginia. ↩︎
7. Section 223 of the Protecting Access to Medicare Act of 2014 established a demonstration program to improve community mental health services by funding planning grants for states to implement CCBHCs. The proposed BBBA would expand this program by providing additional planning grant funding. In addition to setting requirements for CCBHCs, the 2014 Act directed CMS to issue guidance on a prospective payment system for mental health services furnished by CCBHCs to account for the total cost of comprehensive services they provide. The CCBHC demonstration aims to improve the availability and quality of ambulatory behavioral health services and to provide coordinated care across behavioral and physical health. CCBHCs provide nine types of services: crisis mental health services; screening, assessment, and diagnosis; patient-centered treatment planning; outpatient mental health and substance use services; outpatient clinic primary care screening and monitoring; targeted case management; psychiatric rehabilitation; peer support and counselor services and family supports; and intensive, community-based mental health care for members of the armed forces and veterans. CCBHCs may partner with designated collaborating organizations to provide some of these services. ↩︎
8. 42 CFR § 438.3 (e)(2)(iv). ↩︎
9. There may be small population enrollment variations to the classifications of “always carved-in” and “always carved-out.” For example: North Carolina launched its “Standard” acute managed care program July 1, 2021 with most mental health services carved in, with an exception to mandatory enrollment for individuals with SMI or SED for specialty outpatient mental health services. Missouri carves out inpatient mental health services for the foster care population, while these services are carved in for all other managed care populations. ↩︎
10. Three of the 30 states answering “yes” did not provide examples of approved in lieu of services (Arkansas, Utah, and Virginia) and Maryland answered “yes” but noted that no in lieu of services were currently defined. ↩︎
11. The 2016 Medicaid Managed Care Final Rule allows states, under the authority for health plans to cover services “in lieu of” those available under the Medicaid state plan, to receive federal matching funds for capitation payments on behalf of nonelderly adults who receive inpatient psychiatric or SUD treatment or crisis residential services in an IMD for no more than 15 days during a given month. KFF’s 2019 budget survey explicitly asked states to indicate if using Medicaid managed care ILOS for enrollees receiving inpatient treatment in an IMD as detailed in the 2016 final rule; 35 of 41 MCO states reported using this authority in FY 2019 and/or FY 2020 (see Table 9).   ↩︎
12. For example, Texas reported working with CMS and stakeholders to institute several additional behavioral health ILOS. California reported that while it does not permit MCOs to cover ILOS as of July 1, 2021, starting January 1, 2022, it would authorize a new menu of ILOS as part of its CalAIM initiative, including sobering centers. ↩︎
13. KFF analysis of 2020 National Survey on Drug Use and Health (NSDUH). Estimates from the 2020 NSDUH should not be compared to prior years due to methodological changes. ↩︎
14. States must offer ABPs to individuals newly eligible under the Affordable Care Act (ACA) Medicaid expansion and may choose to offer ABPs to most other Medicaid adults as well. ↩︎

Introduction

Despite race being a socio-political system of categorization without a biologic basis, race has historically and continues to play a role in medical teaching and clinical decision making within health care. Race permeates clinical decision making and treatment in multiple ways, including: (1) through providers’ attitudes and implicit biases, (2) disease stereotyping and clinical nomenclature, and (3) clinical algorithms, tools, and treatment guidelines. While some diseases have higher prevalence among individuals with certain genetic ancestry, genetic ancestry is poorly correlated with commonly used social racial categories. The use of race to inform clinical diagnoses and decision making may reinforce disproven notions of race as a biological construct and contribute to ongoing racial disparities in health and health care. This brief provides an overview of the role of race in clinical care and discusses the implications for health and health care disparities and efforts to advance health equity.

Background: Use of Race to Explain Health Differences

Despite there being no biologic basis to race, the medical and scientific community have used race to explain differences in disease prevalence and outcomes. The Western concept of race arose as a system of hierarchical human categorization to support European colonialization, oppression, and discrimination of non-European groups. Within U.S. medical curricula, the concept of race led to theories of biological inferiority of people of color and White supremacy, which fueled an array of atrocities in medicine including forced sterilization efforts targeting Black and Native American women, the use of Henrietta Lacks’ cells for scientific research without consent or acknowledgement, and the infamous Tuskegee Syphilis study, among others. Although research has since disproven the existence of universal biologic differences by race, some recent scientific studies continue to suggest that genetic differences between racial groups may explain differences in health outcomes. For example, an article published in 2020 originally suggested that unknown or unmeasured genetic or biological factors may be contributing to increased severity of COVID-19 illness among Black people, although the article was later revised to clarify that the difference is most likely explained by societal factors. Recent research further suggests that measures of demographic characteristics and socioeconomic position may be more effective than genetic characteristics in explaining disparities in cardiovascular disease between Black and White adults.

There have been growing calls against using race as a factor to explain health differences without acknowledging the role of racism. Contemporary science has demonstrated that race is a social category with no basis in biology. Race is a poor proxy for genetic ancestry and large genetic studies have demonstrated more variation within defined racial groups (intra-racially) than there are between different racial groups (inter-racially). Within the medical and scientific community, there have been longstanding critiques of using racial classifications in diagnosis and treatment of disease. Recently, there have been calls for research studies and guidance in the medical community to name and examine the role of racism versus race as a key driver of health inequities to avoid perpetuating disproven understandings of biologic differences by race.

Although race is not tied to biologic differences, understanding differences in health and health care by race and ethnicity remains important for identifying and addressing disparities in health and health care that stem from racism and social and economic inequities. Complete and accurate race and ethnicity data is key for identifying disparities and taking action to address them. However, there are longstanding gaps and limitations in racial and ethnic data within health care. In addition to deficiencies in survey and administrative data, many institutions report gaps in electronic health record (EHR) data on race, with substantial misclassification of self-reported race and preferred language. The largest discrepancies between EHR demographic data and self-reported data are among individuals who identify as Hispanic.

Race in Clinical Decision-Making and Treatment

Provider Bias and Discrimination

A significant and longstanding body of research suggests that provider and institutional bias and discrimination are drivers of racial disparities in health, contributing to racial differences in diagnosis, prognosis, and treatment decisions. Prior work suggests that providers historically were more likely to perceive individual patient factors rather than provider or health system influences as causes for health disparities. For example, studies have found that providers view Black patients as less cooperative with medical treatment and that providers associate Hispanic patients with noncompliance and risky behavior. A 2015 systematic review of published studies showed that most health care providers appear to have implicit bias in terms of positive attitudes towards White people and negative attitudes towards people of color. While some studies have found no link between bias and provider treatment behaviors, others have demonstrated that provider bias correlates with poorer patient-provider interactions and is associated with disparities in pain management and empathy. Providers who endorse false beliefs about biological differences by race report lower pain for Black patients compared to White patients, which has been linked to systematic undertreatment for pain of Black patients. Similarly, compared to White patients in emergency departments, Hispanic and Asian patients are less likely to receive pain assessments and appropriate pain medication.

Research also shows that patients report being treated unfairly because of their race/ethnicity while accessing health care. For example, a 2020 KFF/the Undefeated survey of adults found that Black and Hispanic adults are more likely than White adults to report they were personally treated unfairly because of their race and ethnicity while getting health care in the past year. Black adults also are more likely than White adults to report negative experiences with health care providers, including feeling a provider did not believe they were telling the truth, being refused a test or treatment they thought they needed, and being refused pain medication. In addition, Black and Hispanic adults are more likely than their White counterparts to say it is difficult to find a doctor who shares their background and experiences and one who treats them with dignity and respect.

Disease Stereotyping and Nomenclature

Some medical training approaches and materials use imprecise labels conflating race and ancestry, portray diseases through racial stereotypes, and rely on racial heuristics (i.e., mental shortcuts or associations) for teaching clinical diagnosis. Preclinical lectures and clinical vignettes for teaching use nonspecific labels (e.g., Black instead of Nigerian/Haitian and Asian instead of Chinese/Vietnamese/Pakistani) and may misuse race as a surrogate for genetic ancestry. In some cases, they inappropriately use race as a proxy for differences in socioeconomic status, health behaviors (such as diet), or other factors that may influence access to health care or risk of disease. In addition, lecture materials commonly present racial differences in disease burden without historical or social context, which may contribute to students connecting diseases with certain racial groups and ascribing differences to genetic predisposition. For example, preclinical lecturers often teach that recurrent lung infections in White individuals are indicative of cystic fibrosis, which may result in missed diagnoses of cystic fibrosis among Black patients. The hereditary condition glucose-6-phosphate dehydrogenase (G6PD) deficiency, which can cause severe anemia, affects individuals of all racial and ethnic backgrounds, with highest prevalence in Africa, the Middle East, and certain parts of the Mediterranean and Asia. However, lecturers and board materials teach students to have higher clinical suspicion for diagnosis of this deficiency in Black patients. In nearly all medical learning resources, Lyme disease is depicted predominantly on White skin and is often diagnosed much later when the disease has progressed to arthritic stages among Black patients. Other examples of connecting race to disease exist in medical textbooks. For example, Black skin is more commonly used to depict sexually transmitted diseases. A recently recalled textbook for nursing students published in 2017 suggested that there were racial differences in how patients experience and respond to pain. The text described Black patients as reporting “higher pain intensity than other cultures,” Hispanic patients as having wide expression of pain (“some are stoic and some are expressive”), Asian patients as valuing “stoicism as a response to pain,” and Native American patients as being “less expressive both verbally and nonverbally.” Beyond teaching materials, medical board examinations often test students based on race-based guidelines and heuristics.

Some disease names use racial or geographic terms that link diseases to certain groups or communities. For example, congenital dermal melanocytosis was formerly referred to as “Mongolian spot.” Similarly, Down syndrome was first described as “Mongolism” by a 19^th century British physician who believed that patients with the genetic disorder resembled individuals of Mongolian descent. As another example, vancomycin infusion reaction was formerly called “Red Man syndrome,” evoking racist connotations against Indigenous American people. Clinical nomenclature has shifted towards more descriptive language, although in some cases, disease naming is tied to place of discovery. Disease names incorporating geography may still perpetuate racist-xenophobic sentiment. In 2015, the World Health Organization noted associating disease names with geography may result in backlash towards members of particular ethnic communities. This experience was seen in the recent use of the label “China virus” for the COVID-19 virus, which has been associated with an increase in public anti-Asian sentiment and Asian hate crimes, as well as an increase in depressive symptoms among individuals identifying with multiple Asian subgroups. Moreover, a recent KFF survey of Asian community health center patients found that one in three felt more discrimination based on their racial/ethnic background since the COVID-19 pandemic began in the U.S. and 15% said they had been accused of “spreading or causing COVID-19.”

Use of Race in Clinical Algorithms, Tools, and Guidelines

While some diseases have higher prevalence among individuals with certain genetic ancestry, the practice of using race within clinical calculators and screening metrics may contribute to health disparities. Today, clinical calculators across multiple specialties assign differential risk for certain diseases or conditions based on race. Prior work has identified a range of examples of clinical calculators that use race (Appendix Table 1). One of the most well-known examples of this practice is within nephrology, where separate measures of kidney function (i.e., estimated glomerular filtration rates, eGFRs) are applied to Black patients compared to non-Black patients. However, similar examples are seen across medicine. For example, a common calculator used to predict success of vaginal birth after Cesarian (VBAC) section had a correction factor for both Black and Hispanic race that decreases the success of VBAC for Black and Hispanic patients by 67% and 68% respectively. This tool may bias providers into disproportionately counseling these patients towards undergoing a Cesarian section. Similarly, pulmonary function tests have a race correction factor, East Asian race is considered a major risk factor for neonatal jaundice, and a different Body Mass Index threshold is used to recommend diabetes testing among asymptomatic Asian and Pacific Islander patients. Given that race is an extremely inconsistent proxy for genetic ancestry, this use of race within clinical calculators may lead to both undertreatment and overtreatment of racialized individuals, and delays in diagnosis and clinical care.

Research shows that some clinical tools may be less effective or misused for certain populations. For example, pulse oximeters have low accuracy in measuring oxygen saturation in darker skin and are three times as likely to miss low oxygen levels in Black patients compared to White patients. Such discrepancies may contribute to delayed intervention and increased mortality for Black patients with COVID-19. In pediatrics, findings suggest that jaundice measurement tools (i.e., bilirubinometer for measurement of transcutaneous bilirubin) have varied reliability based on skin color, with underestimates of risk in lighter skin and overestimates in darker skin tone. Overestimates of bilirubin using transcutaneous measurements may result in unnecessary follow-up blood work (an invasive process for infants), increases in follow-up visits and commute to clinics, and increased infant caregiver distress. In lower resource settings where serum bilirubin measurement is unavailable and transcutaneous bilirubinometry continues to be the primary method for infant monitoring, underestimates of risk may result in delayed intervention for the life-threatening condition neonatal kernicterus, while overestimates of risk for hyperbilirubinemia may result in unnecessary prolonged hospital stays and treatment. In dermatology, the dearth of images depicting lesions on dark skin in medical and dermatologic textbooks and lack of representation of providers with darker skin in the specialty may result in reduced clinician ability to identify life-threatening dermatological presentation on people of color (e.g., sepsis, cellulitis, or severe drug reactions to medications). Skin cancer, while less common in Black and Hispanic patients, is often diagnosed later with subsequently lower survival rates. Fitzpatrick skin type (FS) is the most commonly used skin type classification system in dermatology. It was originally designed to describe the likelihood of skin to burn from UV light exposure but is misused by many providers to describe skin color as a proxy for race.

Preventing against racial bias will be important as use of artificial intelligence and algorithms to guide clinical decision-making continue to expand. The health care system is increasingly using artificial intelligence and algorithms to guide health decisions. Research has shown that these algorithms may have racial bias because the underlying data on which they are trained may be biased and/or may not reflect a diverse population. For example, one study found that an algorithm designed to identify patients with complex health needs resulted in Black patients being assigned the same level of risk as White patients despite being sicker. This unintended bias occurred because of underlying racial bias in how the algorithm was designed, implemented, and interpreted—the algorithm used health care costs to predict health care needs, but Black patients have lower health care costs in part because they face greater barriers to accessing health care. Other examples have found that skewed dermatological datasets result in less accurate models and decreased ability to diagnose skin conditions among darker skin tones. However, research also suggests that carefully designed algorithms can mitigate bias and help to reduce disparities in care.

Race-based Pharmacological Prescribing Guidelines

Race also factors into some medication prescribing decisions, but the use of race is often based on limited evidence from small studies and may result in inappropriate dosing and treatment. In 2005, the U.S. Food and Drug Administrative approved the drug BiDil as a race-specific drug to treat heart failure among African Americans. It was subsequently critiqued for misguided marketing due to using race as a proxy for genotype, which was not evaluated in the study from which conclusions were drawn, although it remains approved as a race-based drug today. There are additional examples of race-based prescribing guidelines. For example, hydrochlorothiazide is recommended as first line hypertension therapy for Black patients based on Joint National Committee (JNC) Hypertension guidelines, as opposed to ACE inhibitor therapy for all other groups due to presumed inefficacy of these agents among Black patients. Eltrombopag, a drug used to treat thrombocytopenia, has a lower recommended starting dose for East Asian patients compared to all other patients. Similarly, the Food and Drug Administration recommends a lower starting dose for Crestor (a statin, used to lower lipid levels) for Asian patients based on a gene that confers metabolic variability, despite the understanding that this gene may be prevalent among any population. There has been ongoing discussion around race-based dosing and the utility of race-based genetic screening for drugs such as warfarin (commonly used for anticoagulation therapy) and abacavir for HIV treatment. Medical community viewpoints on race-based prescribing vary. For example, a study of American cardiologists found that many providers believe race-based drug labels in treatment of heart failure may help prescribe effective medications sooner, while others expressed concerns that considering race could potentially harm patients by resulting in some patients not receiving the drug.

The use of race in the emerging field of pharmacogenomics has come under increasing scrutiny. Pharmacogenomics explores the relationships between genes and drug effects and is viewed as a way to potentially personalize medical therapy. Pharmacogenomics research often uses race to guide decisions about genetic screening prior to using certain drugs to prevent against adverse drug events based on the assumption that certain racial categories may have high or low prevalence of certain genes. Proponents argue that race-based targeting in the field of pharmacogenetics is useful to propel personalized medicine for patient care at the individual level. However, critiques of race-specific therapies express concerns around attempting to address health disparities through commercial drug development versus examining upstream structural factors that may explain differences in treatment response. Moreover, as noted, genetic variation within certain racial/ethnic groups can exceed variation across racial/ethnic categories, suggesting limited utility of this approach and that it may run counter to personalized medicine by treating people based on groupings that have limited genetic association. Current work has limited representation from communities of color, resulting in less extrapolatable, premature recommendations for clinical screening for diverse communities. In addition, inequities across the continuum of drug development and clinical trial participation and evaluation may exacerbate existing disparities in medication access for communities of color, including decreased access to novel, high-cost medications and lower-cost generic therapies.

Implications

The use of race within clinical decision making and treatment may reinforce disproven concepts of racial biology and exacerbate health inequities. Race continues to permeate medical teaching and clinical decision making and treatment in multiple ways, including: (1) through providers’ attitudes and implicit biases, (2) disease stereotyping and nomenclature, and (3) clinical algorithms and treatment guidelines. Racial bias among providers may contribute to poorer quality of care and worse health outcomes. Racial stereotyping of disease and use of race in clinical algorithms and treatment guidelines may lead to errors in clinical diagnosis and management (overtreatment or undertreatment and other delays in clinical care), which may perpetuate and potentially worsen health disparities. Moreover, continued use of race as a biological concept limits examination and understanding of social drivers of health inequities, including racism, and contributes to ongoing racial bias and discrimination among providers.

There have been growing efforts within the medical community to re-evaluate and revise practices around the use of race within clinical care and efforts to move towards race-conscious (as opposed to race-based) medicine. In 2020, the American Medical Association (AMA) adopted new policies to recognize race as a social construct and, as part of these policies, encourages medical education programs to recognize the harmful effects of using race as a proxy for biology in medical education through curriculum changes that explain how racism results in health disparities. In September 2020, the House Ways and Means Committee announced a Request for Information around the misuse of race in clinical care. The Agency for Healthcare Research and Quality (AHRQ) similarly announced in March 2021 a Request for Information on the use of clinical algorithms that have the potential to introduce racial/ethnic bias into healthcare delivery. A subsequent Ways and Means final report released in October 2021 found that professional societies suggest more research (with evaluation of unintended consequences of removing race correctors) is needed before decisions can be made, as a growing number of institutions have removed race from clinical calculators. For example, in the past year-and-a-half, Mass General Brigham hospital, the University of Washington, Vanderbilt University, and NYC Health and Hospitals have all removed race corrections from kidney function estimates. The UC Davis School of Medicine also eliminated race-based reference ranges from renal function estimates, followed shortly by UCSF’s release of a new approach to estimate kidney function without race. Moreover, both the American Society of Nephrology and National Kidney Foundation have outlined approaches to diagnose kidney disease without race. In November 2021, the New York City Department of Health launched a Coalition to End Racism in Clinical Algorithms, pledging to end race adjustment in at least one clinical algorithm and to create plans for evaluation of racial inequities and patient engagement. Additionally, some commonly used medical calculators have made use of race correction factors optional, while others have removed them entirely (see Appendix Table 1). In contrast, other institutions have held off on making changes to clinical calculators or guidelines, noting potential downstream implications for other aspects of clinical care and management.

Looking ahead, continued education of health care providers and students to eliminate beliefs of biologic differences by race, improving pedagogy around distinctions between race and genetic ancestry, and reducing racial bias and discrimination will be important, as will efforts to increase the diversity of our health care workforce. Moreover, continued careful evaluation of how race factors into clinical decision-making through clinical guidelines, tools, and algorithms will be important for mitigating biased decision making, particularly as the use of artificial intelligence and machine-driven algorithms to guide clinical decisions expand.

Key Findings

• After an initial wave of eager parents got their teens vaccinated for COVID-19 in the spring and summer, vaccine uptake among 12-17 year-olds appears to have slowed, with about half of parents saying their teen has gotten at least one dose as of November (before news of the omicron variant), essentially unchanged over the past two months. Enthusiasm is somewhat lower among parents of children ages 5-11 who became eligible for vaccination more recently, with 16% saying their younger child has gotten at least one vaccine dose and another 13% saying they plan to get them vaccinated “right away.” Three in ten parents of both teens and younger children say they will “definitely not” get their child vaccinated for COVID-19. The latest KFF COVID-19 Vaccine Monitor survey of parents was conducted prior to the emergence of the omicron COVID-19 variant, and we will continue to track parents’ attitudes and intentions as more information emerges on the potential impact of this new variant on children.
• Safety and potential side effects continue to be prominent concerns when it comes to parents’ views of COVID-19 vaccines for kids. While about six in ten parents (63%) say they are confident that the COVID-19 vaccines are safe for adults, fewer say they are confident the vaccines are safe for children between the ages of 12 and 17 (52%) and for children ages 5 to 11 (43%). Most parents say getting infected with COVID-19 would be a bigger risk to their child’s health than getting vaccinated. However, majorities of unvaccinated parents and Republican parents believe the vaccine poses a greater risk than the virus itself, even though scientific bodies have concluded the opposite is the case.
• Access barriers are also a concern for some parents when it comes to getting their children vaccinated. Hispanic parents, Black parents, and those with lower incomes are more likely than other parents to say they are concerned they might have to miss work to get their child vaccinated, that they won’t have a trusted place to go, or that they’ll have difficulty traveling to a vaccination location.
• Pediatricians remain parents’ most trusted source of information on the COVID-19 vaccine for children, including across partisans and across race and ethnicity. Still, fewer than half of parents of children ages 5 to 17 have talked with their child’s pediatrician or health care provider about the vaccine. Notably, not all pediatricians are recommending that parents get their children vaccinated for COVID-19; among the 40% of parents who spoke with their child’s health care provider, one-third (16% total parents of teens) say the provider did not recommend the COVID-19 vaccine for their teen and four in ten (15% of total parents of 5-11 year-olds) say the doctor did not recommend it for their child ages 5-11.
• About half of parents of school-age children say their child’s school provided information about how to get their child vaccinated for COVID-19, and more than four in ten say their child’s school encouraged parents to get their children vaccinated. Parents who say their school has encouraged them to get their children vaccinated are more likely to say their child has indeed gotten vaccinated. In fact, parents of 5-11 year-olds whose school encouraged vaccination are four times as likely as those whose school did not encourage vaccination to say their younger child has already gotten the COVID-19 vaccine (28% vs. 7%). While previous KFF Vaccine Monitor reports have shown that a majority of the public supports COVID-19 vaccination requirements for K-12 school teachers, parents oppose schools requiring COVID-19 vaccines for eligible students by a 2-to-1 margin.
• Parents and families have been particularly hard-hit by the COVID-19 pandemic with nearly three in four of parents (73%) saying the pandemic has had a negative impact on their children’s education, almost six in ten (58%) saying it has negatively impacted their own mental health, and half reporting a negative impact on their ability to pay for basic necessities (50%). The share reporting a negative financial impact is substantially higher among lower-income parents compared to those with higher incomes and among Black and Hispanic parents compared to White parents. In addition, mothers are more likely than fathers to say the pandemic has taken a toll on their financial situation as well as their mental and physical health.

Trends In Vaccine Uptake Among Children

Vaccine uptake among teenagers appears to have stalled over the past two months, with about half (49%) of parents of children ages 12 to 17 saying their teen has gotten vaccinated for COVID-19 and just 1% say they plan to do so “right away,” shares that have held relatively steady since September. About one in eight parents (13%) say they want to wait and see how the vaccine is working for other children before getting their teen vaccinated. Notably, three in ten parents say they will definitely not get their 12-17 year-old vaccinated for COVID-19, while a further 4% say they will only get their teen vaccinated if they are required to do so for school. While the latest KFF COVID-19 Vaccine Monitor indicates a slowing down of vaccine uptake among teens, the survey was conducted prior to the emergence of the omicron COVID-19 variant and as more information emerges on the potential impact of this new variant on children, parents’ attitudes towards vaccinating their teenagers and younger children for COVID-19 may change.

With the Pfizer COVID-19 vaccine recently authorized for children between the ages 5 and 11, 16% of parents with children in this age group say their child has gotten vaccinated, and an additional 13% say they plan to get them vaccinated “right away.” Notably, about a third of parents of children ages 5 to 11 say they want to wait and see how the vaccine is working for others before getting their younger child vaccinated. About three in ten parents say they will definitely not get their younger child vaccinated, and a further 7% say they will only do so if their school requires it.

Unsurprisingly, most unvaccinated parents say they will “definitely not” get their 12-17 year-old or their 5-11 year-old vaccinated for COVID-19. Among vaccinated parents, three in four say their 12-17 year-old has already gotten at least one dose of the vaccine. However, when it comes to children ages 5 to 11, vaccinated parents express less enthusiasm, with fewer than half (46%) saying they have already gotten their younger child vaccinated or will do so right away and 39% saying they will wait and see before getting their younger child vaccinated.

As with vaccination attitudes among adults, parents’ intentions for vaccinating their children diverge largely along partisan lines. Among parents of 12-17 year-olds, eight in ten Democrats say their teenager has already gotten at least one dose of the COVID-19 vaccine, compared to about half of independents and just a quarter of Republicans. Indeed, half of Republican parents say they will “definitely not” get their 12-17 year-old vaccinated.

A similar pattern is seen among parents of younger children, with about half of Democrats saying their 5-11 year-old is already vaccinated or will be right away, compared to three in ten independents and about one in ten Republicans. Again, about half of Republican parents say they will “definitely not” vaccinate their younger child. Notably, however, at least three in ten parents of children ages 5-11 across partisan groups say they want to “wait and see” how the vaccine works for other children before getting their child vaccinated.

While early vaccine uptake among adults indicated that people of color were less likely to be vaccinated than White adults, the same pattern does not appear to be emerging among children. In fact, among parents of 12-17 year-olds, Hispanic parents (62%) are somewhat more likely to say their teen is vaccinated compared to either Black parents (48%) or White parents (42%). White parents are substantially more likely than either Black or Hispanic parents to say their teen will “definitely not” get vaccinated.

Among parents of younger children, there are no significant differences by race or ethnicity in parents’ intentions to vaccinate their 5-11 year-old.

Parents’ Concerns And Worries About The COVID-19 Vaccine For Children

Parents who have not yet vaccinated their children offer many different reasons why they are not eager to get their child vaccinated. Chief among them is a sense that there is not enough information about the vaccine for children or that more research needs to be done. Many parents also cite concerns about side effects or say they don’t believe the vaccine is necessary for children. For parents of unvaccinated teens, about one in ten cite their child not wanting the vaccine (11%) and their own lack of trust in the vaccine (10%) as the main reason why their teen has not gotten vaccinated for COVID-19.

Parents’ desire for more information and their concerns about the safety and potential side effects of the vaccine are evident when they explain in their own words the main reason why their child has not yet gotten vaccinated. Even among vaccinated parents, these concerns are keeping some of them from getting their child vaccinated right away.

While about six in ten parents (63%) say they are “very confident” or “somewhat confident” that the COVID-19 vaccines are safe for adults, they are less likely to express confidence in its safety for children. About half of parents (52%) say they are confident the vaccines are safe for children between the ages of 12 and 17 while about four in ten say they are confident in its safety for children ages 5 to 11 (43%). This lower level of confidence in the vaccine’s safety for children, and especially for younger children, may help explain the more cautious approach parents appear to be taking when deciding on whether to vaccinate their children.

Despite the CDC stating that serious side effects such as myocarditis or severe allergic reactions from the COVID-19 vaccine among children are rare, parents who have not yet gotten their child vaccinated remain concerned about the potential for side effects. Among parents of unvaccinated 12-17 year-olds, about two-thirds (65%) say they are worried their child would experience serious side effects if they got the COVID-19 vaccine. Similarly, about seven in ten parents of unvaccinated 5-11 year-olds say they are worried their younger child would experience serious side effects if they got vaccinated. Notably, even among parents who are themselves vaccinated but have yet to get their child the COVID-19 vaccine, majorities say they are worried their child would experience a serious side effect.

Majorities of parents say they do not have enough information about the safety, effectiveness, or side effects of the COVID-19 vaccines in children. The lack of information may be further contributing to parents’ hesitation towards getting their children vaccinated as groups of parents who are less likely to say they have a vaccinated child - younger parents, those without college degrees, Republicans, and unvaccinated parents - are also among the most likely to say they don’t have enough information.

Among parents of both teens and younger children who are eligible to be vaccinated, a majority say that becoming infected with coronavirus would be a bigger risk to their child’s health (57% among parents of 12-17 year-olds and 55% among parents of 5-11 year-olds), while about four in ten say getting the vaccine is a bigger risk to their child’s health (39% and 41%, respectively). While clear majorities of Black and Hispanic parents see getting infected as bigger risk to their child’s health (particularly among parents of teens), White parents are more split, with nearly half (45%) saying getting the vaccine is a bigger risk for children in both age groups. Not surprisingly, these attitudes also diverge by partisanship and vaccination status, with large majorities of Democrats and vaccinated parents saying getting the virus would be a bigger risk to their child’s health and most Republicans and unvaccinated parents seeing vaccination as the bigger risk.

Access Barriers To Vaccinating Children

While concerns and worries about the safety and potential side effects of the vaccines in children are prominent among parents, barriers to accessing the vaccine are also an issue for some parents. Among parents of unvaccinated children between the ages of 5 and 17, about three in ten (31%) are concerned about having to take time off work to get their child vaccinated, about one in five (22%) are concerned about not having a trusted place to go, and one in six (17%) are concerned about difficulty traveling to a site to get their child vaccinated. Black and Hispanic parents are more likely than White parents to say they are worried about each of these barriers to access. Similarly, parents with lower household incomes are more likely than those with higher incomes to express these concerns.

Trusted Sources Of Information

As previous KFF research has shown, pediatricians remain the most trusted source of information on the COVID-19 vaccine for parents. About three in four parents (77%) say they trust their child’s pediatrician or health care provider to provide reliable information about the vaccines for children. Across partisans and across race and ethnicity pediatricians are the most trusted source of vaccine information for parents. About six in ten parents say they trust their local public health department (60%) and the CDC (57%) to provide reliable information about the COVID-19 vaccines for children, though there are large partisan differences with Republicans less likely than Democrats to trust either of these as sources of information. Parents’ trust in the CDC for information regarding vaccines for children has decreased since July when two-thirds (66%) said they had at least a fair amount of trust in the CDC to provide reliable information.

Reaching unvaccinated parents with information about the COVID-19 vaccine for children is likely to be a challenge as they are less likely than their vaccinated counterparts to trust each of the sources of vaccine information tested. Only pediatricians are trusted by a majority of unvaccinated parents to provide reliable information about the COVID-19 vaccine for children, while fewer than half of unvaccinated parents trust the CDC, their local public health department, their child’s school or daycare, or other parents they know for such information.

Parents’ Conversations With Health Care Providers

Despite high levels of trust in pediatricians for vaccine information, fewer than half of parents of children ages 5 to 17 say they have talked with their child’s pediatrician or health care provider about the COVID-19 vaccine. Four in ten parents of children ages 5 to 17 have talked with their child’s pediatrician about the COVID-19 vaccine—up from 30% in July—including 45% of parents of teens and 37% of parents of children ages 5 to 11. While most parents who spoke with their child’s health care provider say the provider recommended their child get vaccinated, 34% of parents of teens who spoke to their doctor (16% of total parents of teens) and 40% of parents of children ages 5 to 11 who spoke to their doctor (15% of total parents of kids in this age group) say their pediatrician did not recommend their child get vaccinated for COVID-19.

On balance, conversations parents have had with health care providers seem to have tipped the scales toward a decision to vaccinate their child for COVID-19. About four in ten (37%) parents who talked to their child’s doctor (15% of all parents of 5-17 year-olds) say the conversation made them more willing to get their child vaccinated for COVID-19, while few say it made them less willing to vaccinate their child. More than one in five Democrats, vaccinated parents, and parents who say their teen ultimately got vaccinated for COVID-19 say they a conversation with their child’s doctor made them more willing to get their child vaccinated.

The vast majority of parents (91%) say they have a health care provider they trust to answer questions about their child’s health. However, the share who say they do not have such a trusted provider is somewhat higher among Hispanic parents (14%) than White parents (6%). Parents who are uninsured are three times as likely as those who have health insurance to say they do not have a health care provider that they trust to answer questions about their child’s health (21% vs. 7%). Unsurprisingly, parents without a health care provider that they trust to answer questions about their child’s health are less likely than parents who do have a trusted provider to say they have talked to their child’s pediatrician or health care provider about the COVID-19 vaccine (42% vs. 18%).

The Broader Context Of Parents’ Attitudes Towards COVID-19 Vaccines For Kids

The slowdown in uptake of COVID vaccines among teens comes at a time when about half (49%) of parents of vaccine-eligible children (those between the ages of 5-17) say they are very or somewhat worried that their child will get seriously sick from coronavirus. This is considerably higher than the share of parents who worry that they personally will get seriously ill (36%) and similar to the share who worry about someone else in their family getting sick (54%).

Parents’ worries about their children getting sick are correlated with their vaccine behaviors; two thirds (66%) of those who say they are worried about their child getting sick say that their teen has gotten at least one dose of the COVID-19 vaccine compared to about four in ten of those who are not worried (38%). Similarly, among parents who are worried about their child getting sick, 23% say their 5-11 year-old has been vaccinated for COVID-19, whereas among those who are not worried, just 9% say their younger child has gotten the vaccine.

The share of parents who worry about their children getting seriously ill from COVID-19 is considerably higher among certain populations compared with others. For example, majorities of Hispanic parents (66%) and Black parents (58%) say they are worried compared with 43% of White parents. Vaccinated parents are more likely to worry about their child getting sick than unvaccinated parents (59% vs. 33%) as are mothers compared to fathers (55% vs. 41%) and those without college degrees compared to college graduates (53% vs. 41%). There is a partisan dimension to worry as well, with 70% of Democrats saying they are worried about their children getting seriously ill from COVID-19 compared to 26% of Republicans.

Despite concerns among parents about other family members besides their children getting seriously ill from COVID-19, by a 3-to-1 margin parents see protecting their children from getting sick as a bigger reason to get them vaccinated, rather than preventing them from spreading coronavirus to other family members. Among parents of both teens and younger children, about three-quarters say protecting their child from illness is the bigger reason to get them vaccinated compared to about a quarter who say preventing spread to other family members is the bigger reason.

We have consistently found that among adults overall, about half believe that getting vaccinated against COVID-19 is a personal choice and the other half see it as part of everyone’s responsibility to protect the health of others (these shares were 51% and 47%, respectively in our November survey).

When it comes to vaccinating children however, parents lean more heavily towards the side of personal choice. About two-thirds (65%) of parents say that getting children vaccinated is a parent’s personal choice, while one-third (34%) see it as part of a parent’s responsibility to protect the health of others. There is a deep partisan split on this, as nine in ten Republicans (91%) say it is a personal choice, and six in ten Democrats (62%) say it is part of a collective responsibility. Vaccinated parents are split, with about half giving each response (47% vs. 52%), while nearly all unvaccinated parents (94%) say getting children vaccinated is a parent’s personal choice.

Given the emphasis on personal choice, it’s notable that about one in five parents (21%) say they have felt unfairly pressured to get their child vaccinated, rising to three in ten among Republican parents (30%) and those who are themselves unvaccinated (31%).

A Profile Of Parents Who Have Skipped Or Delayed Other Vaccines

While nine in ten parents say they normally keep their children up-to-date with recommended childhood vaccines such as MMR, 9% say they have delayed or skipped some childhood vaccines for their children. Looking at these parents’ views on COVID-19 vaccines provides some insights into the overlap between general vaccine skepticism and attitudes toward this particular vaccine.

Among parents who have skipped or delayed childhood vaccines for their kids, 69% have not gotten a COVID-19 vaccine themselves, including 64% who say they will “definitely not” get vaccinated. In addition, 68% of this group says they are not confident the COVID-19 vaccine is safe for adults, 77% are not confident it is safe for children ages 12 to 17, and 80% are not confident it is safe for children ages 5 to 11. Further highlighting the challenge for reaching these parents with accurate information about the vaccines, fewer than half (48%) say they trust their child’s pediatrician to provide reliable information about COVID-19 vaccines for children, compared to 80% of parents who have not delayed other childhood vaccines.

The Role Of Schools In COVID-19 Vaccinations For Children

Among parents of children ages 5-17 who attend school, about half (49%) say their child’s school has provided them with information about how to get a COVID-19 vaccine for their child, and nearly as many (44%) say the school has encouraged parents to get their child vaccinated. One in five parents say the school has asked about their child’s COVID-19 vaccination status while a much smaller share (9%) say the school has said they will require students to be vaccinated to attend school in-person.

Among parents of children ages 12-17 who were eligible for vaccination over the summer, the shares who say their child’s school provided information on COVID-19 vaccines, encouraged vaccination, or asked about their child’s vaccination status have all increased since July (from 42% to 52%, 40% to 51%, and 11% to 25%, respectively).

Parents who say their school has encouraged parents to get their children vaccinated are more likely to say their child has indeed gotten vaccinated when compared to parents whose child’s school has not encouraged vaccination. Among parents of 12-17 year-olds whose school encouraged vaccination, 60% say their teen has already gotten the COVID-19 vaccine, compared to four in ten (42%) of parent who say their teen’s school did not encourage vaccination. Similarly, parents of 5-11 year-olds who say their school encouraged them to get their child vaccinated are four times as likely to say their younger child has already gotten the COVID-19 vaccine than those who say their school did not encourage vaccination.

While previous Vaccine Monitor reports have shown that a majority of the public supports COVID-19 vaccination requirements for K-12 school teachers, the latest survey finds that parents oppose requiring COVID-19 vaccines for eligible students by a 2-to-1 margin. One-third (32%) of parents of 5-17 year-olds who attend school say they think schools should require all eligible students to get a COVID-19 vaccine, while two-thirds (67%) say schools should not have such a requirement. The share of parents who say schools should require students to be vaccinated for COVID-19 is somewhat higher among vaccinated parents (47%) and Hispanic parents (45%), but reaches a majority only among parents who identify as Democrats (55%).

Financial And Health Impacts Of The Pandemic On Parents And Families

As previous research has shown, the COVID-19 pandemic has taken a particular toll on parents and families. Nearly three-quarters (73%) of parents of children under 18 say the pandemic has had a major or minor impact on their children’s education. Almost six in ten parents (58%) say the pandemic has negatively impacted their own mental health, somewhat higher than the share of adults without children who say so (52%). About half of parents say the pandemic has had a negative impact on their relationships with family members (51%) and their ability to pay for basic necessities (50%), again both somewhat higher than among adults without children (45% and 40%, respectively). About four in ten parents also say the pandemic has negatively affected their physical health (41%) and their ability to care for their children (40%).

While some of the pandemic’s impacts on families have hit a wide swath of the population, others are more common among certain groups including people of color, those with lower incomes, and mothers. For example, similar shares of parents across groups say the pandemic has negatively affected their children’s education and their relationships with family members. In other areas, negative impacts are less equally distributed. For example, roughly two-thirds of mothers (66%) say the pandemic has negatively impacted their mental health compared to half of fathers. Mothers are also more likely than fathers to report a negative impact on their physical health (49% vs. 32%) as are Black and Hispanic parents compared to White parents (49%, 46%, and 37%, respectively). When it comes to financial impacts, 73% of parents with household incomes under $40,000 and 56% of those with incomes between $40,000 and $90,000 say the pandemic has negatively impacted their ability to pay for basic necessities compared to 28% of higher-income parents. Six in ten Black parents (59%) and Hispanic parents (61%) similarly report negative financial impacts compared to just under half of White parents (45%), as do a higher share of mothers compared to fathers (57% vs. 41%).

This KFF COVID-19 Vaccine Monitor Poll was designed and analyzed by public opinion researchers at the Kaiser Family Foundation (KFF). The survey was conducted November 8-23, 2021 via telephone and online among a nationally representative sample of 1,196 parents with a child under the age of 18 in their household. The sample includes 483 parents reached through the November 2021 KFF COVID-19 Vaccine Monitor and 713 who were reached online through a probability-based online panel (SSRS Opinion Panel and Ipsos Knowledge Panel). The Vaccine Monitor respondents were reached through a random digit dial telephone sample of adults ages 18 and older (including interviews from 139 Hispanic parents and 114 non-Hispanic Black parents), living in the United States. Phone numbers used for the telephone component 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. The sample also included 93 parents reached by calling back respondents that had previously completed an interview on the KFF Tracking poll (n=52) or the SSRS Omnibus poll (n=41) at least six months ago. See the November 2021 KFF COVID-19 Vaccine Monitor for further details on the telephone component.

For the online component, invitations were sent to panel members who previously identified as the parent of a child ages 5 to 17. As with the telephone component, Hispanic and Black respondents were oversampled. The SSRS Opinion Panel and Ipsos Knowledge Panel are nationally representative probability-based web panels. SSRS Probability Panel members are recruited randomly in one of two ways: (a) Through invitations mailed to respondents randomly sampled from an Address-Based Sample (ABS). ABS respondents are randomly sampled by MSG through the U.S. Postal Service’s Computerized Delivery Sequence (CDS). (b) from a dual-frame random digit dial (RDD) sample, through the SSRS Omnibus survey platform. Sample for the SSRS Omnibus is obtained through Marketing System Groups (MSG). Ipsos Knowledge Panel members are also recruited using ABS, based on a stratified sample from the CDS.

The combined telephone and online parent samples were weighted to match the sample’s demographics to the national parent population using data from the Census Bureau’s 2019 U.S. American Community Survey (ACS). Weighting parameters included sex, age, education, marital status, child age, and region, within race-groups. The sample was also weighted to match current patterns of telephone use using data from the January-June 2021 National Health Interview Survey. The weights take into account differences in the probability of selection for each sample type (phone and web). This includes adjustment for the sample design and geographic stratification of the telephone sample, within household probability of selection, and the design of the panel-recruitment procedure.

The margin of sampling error including the design effect for the full sample of parents is plus or minus 4 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.