Science over Cynicism: The Race to Preserve Best-Practice Applied Behavior Analysis through Expanded Awareness, Advocacy, and Enforcement of the Mental Health Parity and Addiction Equity Act

Abstract

Widespread insurance funding of applied behavior analysis (ABA) as a medically necessary mental health benefit in the treatment of autism spectrum disorder (ASD) has placed behavior analysts in the role of health-care providers, and the race is on to see whether best-practice ABA will be defined by the insurance industry or behavior analysts. Behavior analysts who work with insurance and/or Medicaid have increasingly encountered payor guidelines that interfere with their efforts to implement treatment plans that reflect generally accepted standards of care. When these arbitrary limits are integrated into ABA practices, payors—not science—are shaping how ABA is implemented. Many common payor guidelines, such as location exclusions, caregiver participation requirements, and age and hour limits, violate the federal Mental Health Parity and Addiction Equity Act (MHPAEA). For the first time since MHPAEA became law, federal agencies are scrutinizing payor guidelines and practices through the lens of MHPAEA and working to increase compliance. In this new climate of MHPAEA enforcement, behavior analysts are uniquely positioned to identify, reject, and report improper guidelines that constrain their ABA practices and promote best practices to optimize patient outcomes. This review of MHPAEA in the context of ABA highlights common violations and current advocacy and aims to equip behavior analysts with the tools to free their practices from improper limits.

Supplementary Information

The online version contains supplementary material available at 10.1007/s40617-024-00932-2.

History of Effective Advocacy

Virtually all funding for applied behavior analysis (ABA) in the United States is the product of effective advocacy that generated the political will to change public policy. The effectiveness of ABA in treating deficits and behaviors associated with autism spectrum disorder (ASD) was demonstrated in the late 1980s (Lovaas, 1987), replicated in subsequent studies, and supported by the results of meta-analyses (Eldevik et al., 2009; Makrygianni & Reed, 2010; Reichow, 2012; Virués-Ortega, 2010); however, health plans, insurers, and insurance issuers (hereafter “payors”) historically refused to cover ABA-based autism treatment on the basis that it was experimental or educational (Stuart, 2011). Parents of children with ASD led the way to compel payors to cover ABA as a medically necessary treatment. In 2000, a coalition of parents in Indiana, including Michele Trivedi, Susan Pieples, Nan Daley, Susan Hansen, and Leah Helvering, joined forces with Kim Dodson at The Arc of Indiana to pass the nation’s first state autism mandate, requiring state-regulated health plans to cover ABA (Arlington, 2021). Another 8 years would pass before the next state mandate became law in South Carolina, largely through the efforts of Lorri Unumb, Esq., Lisa Rollins, and Marcella Ridley, all mothers of children with ASD (Johnson, 2007). Autism Speaks then hired Unumb to pass autism insurance reform legislation, commonly known as autism mandates, state by state (Unumb & Unumb, 2011). Today, all 50 states, the District of Columbia, the U.S. Virgin Islands, and Guam mandate at least some state-regulated health plans to cover ABA-based autism treatment, a shining testament to the power of advocacy in the hands of Unumb’s inspiring leadership and the unflagging commitment of determined individuals who persisted until their state or territory enacted autism insurance reform (Autism Speaks, 2019; Better Prices, Better Quality, Better Choices For Health Coverage Temporary Amendment Act, 2013; Coverage for Autism Spectrum Disorders in Health Care Plans, 2019; Insurance Coverage for Autism Spectrum Disorder, 2022).

Mental Health Parity and Addiction Equity Act

With the establishment of ABA as a medically necessary treatment for ASD, which is recognized as a neurodevelopmental disorder in the Diagnostic and Statistical Manual for Mental Disorders, Fifth Edition (DSM-V; American Psychiatric Association, 2013), individuals diagnosed with ASD have gained the protection of a panoply of federal laws at the same time that payors have sought to establish guidelines, both to ensure that ABA services rise to the level of medically necessary treatment and to manage utilization of the ABA benefit. As payors have grown more familiar with the elements of ABA that comprise generally accepted standards of care, their guidelines, including initiation and continuation criteria, have often become more detailed. These guidelines, which are used to authorize, deny, or limit treatment, must comply with federal laws that define and protect patient rights. One such federal law is the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equatiy Act, 2008 (MHPAEA).

Protection from Discrimination

MHPAEA states, in essence, that limits on mental health services shall be no more restrictive than limits placed on medical/surgical services in the same classification (e.g., outpatient in-network; outpatient out-of-network). MHPAEA initially applied only to large group and self-insured plans, but the Patient Protection and Affordable Care Act (ACA; 2010) broadened MHPAEA to apply to individual health insurance coverage and, indirectly, to small group plans. The Centers for Medicare and Medicaid Services (CMS) has issued guidance clearly stating that managed care organizations administering Medicaid benefits and Children’s Health Insurance Programs (CHIP) must comply with MHPAEA, as do Alternative Benefit Plans (Centers for Medicare & Medicaid Services, 2016; Mann, 2013). See Table 1.

Table 1.

Application of MHPAEA by Health Plan Type

Health Plan Type	Does MHPAEA Apply?	Exceptions
Large Group	Yes
Small Group	Yes, through Patient Protection and Affordable Care Act
Individual	Yes, through Patient Protection and Affordable Care Act	Short-term health plans
Self-Insured	Yes	Groups with fewer than 50 employees are exempt.
Medicaid Managed Care	Yes
Medicaid Fee-for-Service	No	MHPAEA applies if beneficiaries receive any benefit through managed care.
Children’s Health Insurance Program (CHIP)	Yes
Alternative Benefit Plans	Yes
Federal Employees Health Benefits Program (FEHBP)	Yes, through FEHBP policy explicitly adopting MHPAEA
TRICARE	No
Medicare	No

Note. MHPAEA = Mental Health Parity and Addiction Equity Act. Adapted from "Improving Health Coverage for Mental Health and Substance Use Disorder Patients, Including Compliance with the Federal Mental Health and Substance Use Disorder Parity Provisions: Report to Congress,” by U.S. Department of Labor, 2016, Appendix C, p. 5 (https://www.dol.gov/sites/dolgov/files/EBSA/laws-and-regulations/laws/mental-health-parity/improving-health-coverage-for-mental-health-and-substance-use-disorder-patients.pdf)

Quantitative Treatment Limitations

MHPAEA characterizes limits as quantitative treatment limits (QTLs) and nonquantitative treatment limits (NQTLs). QTLs are easily identifiable as virtually any limit that includes a quantity (e.g., visit limits, hour limits, age limits). For example, a guideline that limits autism treatment to 25 hr per week regardless of medical necessity would violate MHPAEA’s prohibition against QTLs. Likewise, guidelines that limit or dictate billable hours of a behavior analyst based on the number of hours of direct ABA would be viewed as a QTL prohibited by MHPAEA.

Nonquantitative Treatment Limitations

Nonquantitative treatment limitations (NQTLs) are nonnumerical limits on mental health benefits, including ABA, that are not imposed on medical/surgical benefits. NQTLs are not as readily identifiable as QTLs, which prompted the U.S. Department of Labor and the Department of Health and Human Services (2016) to issue subregulatory guidance that describes limits that may violate MHPAEA’s prohibition of NQTLs, including preauthorization and treatment plan requirements that are routinely imposed as conditions to access autism treatment; location exclusions; rate-setting methodologies; and medical management and network admission standards. NQTLs are prohibited by MHPAEA, unless they are “comparable to, and are applied no more stringently than, those [factors] used in applying the limitation with respect to med/surg benefits in the same classification” (U.S. Department of Labor & U.S. Department of Health and Human Services, 2016).

Consolidated Appropriations Act, 2021

The Consolidated Appropriations Act, 2021 (“CAA”) was enacted in late 2020 and amended MHPAEA to require payors to “perform and document their comparative analyses of the design and application of NQTLs” (Consolidated Appropriations Act, 2021). This requirement is illustrative of the federal initiative to increase MHPAEA enforcement. The comparative analysis is meant to determine whether a payor’s “processes, strategies, evidentiary standards, and other factors used to apply the NQTLs” to mental health benefits, including ABA, are “comparable to, and are applied no more stringently than, the processes, strategies, evidentiary standards, and other factors used to apply the NQTLs to medical/surgical benefits in the benefits classification” (U.S. Department of Labor, 2021, p. 2). Payors must make the comparative analyses available to state and federal regulators upon request. No comparative analysis had been completed sufficiently, according to the 2022 MHPAEA Report to Congress, at the time the report was published, but payors removed NQTLs when their analyses were found to be insufficient (Walsh et al., 2022). This trend continued, with the 2023 MHPAEA Report to Congress indicating that most payors “corrected potential MHPAEA violations” upon receiving a request for comparative analysis or a notice that the comparative analysis was insufficient (Su et al., 2023, p. 31). Therefore, the comparative analysis requirement imposed by the CAA is a powerful new tool in the effort to enforce MHPAEA.

Common MHPAEA Violations in ABA

Despite increased guidance from regulators, payors continue to publish eligibility and continuation criteria in guidelines for ABA that contain requirements likely to violate MHPAEA. In general, guidelines that feel obstructive warrant additional scrutiny. Because this article is not meant to act as or replace the advice of a lawyer, a focus on the most straightforward violations of MHPAEA is key to preparing behavior analysts to recognize and reject those limits that would impede the design and implementation of ABA that reflects generally accepted standards of care.

Exclusion of ABA Coverage

One of the most fundamental MHPAEA violations is the exclusion of ABA as a covered benefit in a health insurance plan with mental health benefits. State autism mandates requiring coverage of autism treatment, including ABA, apply to at least some state-regulated plans but do not apply to self-insured plans, which are regulated by the U.S. Department of Labor. The Kaiser Family Foundation estimates that 65% of all U.S. workers are in a self-insured plan in which employers pay claims as they arise, rather than paying insurance premiums (Claxton et al., 2022). The customizable nature of self-insured plans has resulted in the exclusion of ABA in some plans, which is clearly an NQTL prohibited by MHPAEA.

Although MHPAEA does not mandate that a health insurance policy include mental health coverage, it does prohibit discriminatory limits when mental health is a covered benefit. The exclusion of ABA coverage altogether exemplifies the discriminatory practices that MHPAEA seeks to address, and the removal of that exclusion is highlighted in both the 2022 MHPAEA Report to Congress (Walsh et al., 2022, p.21) and the 2023 MHPAEA Report to Congress (Su et al., 2023, pp. 43, 47, 55). As a result of newly energized MHPAEA enforcement, most payors that administer self-insured plans have removed the ABA exclusion amid concerns that such an exclusion clearly violates MHPAEA.

Preauthorization Requirements

Preauthorization requirements for mental health services, including ABA, are broadly viewed as inconsistent with MHPAEA unless such requirements are “comparable to, and applied no more stringently than” preauthorization requirements for medical/surgical services in the same classification (Thalmayer et al., 2018; U.S. Department of Labor & U.S. Department of Health & Human Services, 2016). In its 2022 MHPAEA Report to Congress, the US Departments of Health and Human Services, Labor, and Treasury indicated that a preauthorization requirement was the most common NQTL scrutinized in increased federal enforcement efforts in which an initial determination of noncompliance with MHPAEA was found 100% of the time (Walsh et al., 2022, pp. 12, 19). In the Departments’ 2023 MHPAEA Report to Congress, preauthorization requirements again topped the list of initial determinations of noncompliance with MHPAEA (Su et al., 2023, p. 56).

Eligibility Criteria

Once a patient has a diagnosis of ASD, the criteria to initiate treatment should be minimal. In fact, the American Academy of Pediatrics recommends that treatment be provided as soon as an ASD diagnosis is “seriously considered” (Johnson & Myers, 2007). A patient’s ASD diagnosis should be sufficient for that patient to access treatment to address the symptoms associated with that diagnosis. Payors who deny authorization of ABA services because they view the patient’s diagnosis as insufficient in some way should ensure their in-network diagnosticians understand and can meet their requirements. In those instances where an appropriate professional acting within the scope of his/her license has made a diagnosis of ASD but has omitted payor-specific documentation, the patient should be permitted to access ABA while the payor solicits additional documentation from the diagnostician; otherwise, the payor’s diagnostic requirements may be perceived as acting as a barrier to medically necessary treatment, which may be an impermissible NQTL if similar delays and/or diagnostic requirements are not encountered when accessing medical/surgical services.

Symptom Severity

Guidelines delineating eligibility criteria that require a patient with an ASD diagnosis to have more severe symptoms beyond those that qualify the patient for an ASD diagnosis clearly run afoul of MHPAEA. For both commercial insurance and Medicaid, an understanding of the severity of a patient’s symptoms may be an appropriate clinical consideration, but the requirement that behaviors or deficits must be severe or pose a health or safety risk is clearly prohibited by MHPAEA, as well as other federal laws. Consider the example of a patient with diabetes and imagine a payor requirement that limits treatment to those patients with severe diabetes. Likewise, imagine a payor limiting treatment of asthma to those patients with severe asthma. Because patients access treatment for diabetes, asthma, and other medical conditions regardless of the severity of their symptoms, a policy that requires symptoms to be severe for a patient to access ASD treatment is more restrictive than medical/surgical limitations in the same classification and, therefore, a violation of MHPAEA.

Fail-First/Step Therapy

The requirement to try less intensive interventions or reduced hours of ABA before all medically necessary ABA is authorized is considered a fail-first or step therapy policy, which is prohibited by MHPAEA. In fact, such a requirement is identified in the Warning Signs subregulatory guidance, citing it as a likely MHPAEA violation, “For coverage of intensive outpatient treatment for MH/SUD [mental health or substance use disorder], the plan/insurer requires that a patient has not achieved progress with non-intensive outpatient treatment of a lesser frequency” (U.S. Department of Labor & U.S. Department of Health and Human Services, 2016).

Age Limits

ABA that is denied or reduced based on a patient’s age would violate MHPAEA’s prohibition on QTLs. Some state autism mandates include age limits that are inconsistent with MHPAEA and should not be enforced by the state or relied on by payors. A 2018 settlement agreement in a class action lawsuit brought against Anthem in Indiana identified the class as “beneficiaries of Anthem-issued health plans who, while over age seven and while residing in the State of Indiana, had an ASD diagnosis and were denied coverage in whole or in part for ABA therapy at any time from April 9, 2012 through December 31, 2017” (W. P. v. Anthem Ins. Cos., 2017). In that settlement agreement, Anthem agreed to  “. . . cease the use of guidelines relating to coverage for ABA therapy based solely on an individual’s age. . . .” This settlement agreement is illustrative of the growing understanding of the way in which MHPAEA should influence payor guidelines and authorization of ABA.

Medicaid Age Limits

Payors who manage an ABA benefit for state Medicaid agencies may be administering benefits under Medicaid’s Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) benefit, which is limited to individuals under 21 years of age (Social Security Act, 2012). That is, when administering EPSDT benefits, payors do not typically have the discretion to authorize services for older individuals. Even so, some state Medicaid agencies have begun to recognize ABA as a standard benefit for adults, so individuals who “age out” of a Medicaid EPSDT program should be encouraged to seek ABA coverage through the standard Medicaid benefit.

Treatment Plans

Many payors require a treatment plan as a criterion for treatment authorization. Elements that comprise the treatment plan are often specified, and sometimes, the payor requires the provider to use the payor’s treatment plan template. Each of these criteria violates MHPAEA unless they are comparable to and not applied more stringently than medical/surgical services in the same classification. In fact, the requirement of a treatment plan as a condition of authorization is highlighted in the Warning Signs subregulatory guidance. Of course, a treatment plan is likely viewed as a best practice in ABA, but the payor cannot require the treatment plan as a condition of treatment authorization (U.S. Department of Labor & U.S. Department of Health & Human Services, 2016). Given that the requirement of a treatment plan is likely an NQTL, any associated micromanaging of treatment goals and/or requirements to use a specific format or template would also be inconsistent with MHPAEA.

Hour Limits

Decisions about the number of hours that are medically necessary for any given patient must be individualized. To the extent that a payor’s guidelines include hour limits or that its representatives deny hours based on arbitrary limits, such limits are clear quantitative treatment limitations in violation of MHPAEA. In addition to general limits on treatment hours, hour limits imposed on billable activities, such as assessment and reassessment, are inconsistent with MHPAEA.

Medically Unlikely Edits

More and more, hour limits are experienced as daily billing code limits called “medically unlikely edits” (MUEs). MUEs are assigned to Current Procedural Terminology (CPT) and Healthcare Common Procedure Coding System Codes (HCPCS) by CMS and its National Correct Coding Initiative (NCCI; Centers for Medicare & Medicaid Services, 2022). Payor fee schedules often include a column next to each billing code indicating the MUE, implying a daily limit for the activities captured by each billing code. For the CPTⓇ adaptive behavior codes—the codes most commonly used to bill ABA—the MUE are intended to flag potential billing errors and fraud but are not intended to limit medically necessary ABA or circumvent MHPAEA’s prohibition on QTLs. Claims for preauthorized, medically necessary, and properly documented ABA should be paid (Centers for Medicare & Medicaid Services, 2022).

Location Exclusions

In the practice of ABA, the location, such as a school or community setting, may be an integral part of the treatment plan and may be necessary to ensure treatment goals are met, especially generalization of skills across settings (Gunning et al., 2019; Leaf et al., 2018). According to the Warning Signs guidance, "Restrictions based on geographic location, facility type, provider specialty, and other criteria that limit the scope or duration of benefits for services provided under the plan or coverage” are an NQTL (U.S. Department of Labor & U.S. Department of Health and Human Services, 2016). CMS makes clear that "[s]chools are particularly appropriate places to provide . . . behavioral health services" (Centers for Medicare & Medicaid Services, 2014, p. 21).

School Settings

Payor guidelines commonly include language excluding educational services, often referencing accommodations provided by a school as part of an Individualized Education Program (IEP). In theory, the exclusion of educational services may not violate MHPAEA; in practice, though, many payor representatives interpret this exclusion as a geographic limitation precluding services in a school setting, and that turns an educational exclusion into a geographic exclusion, likely a prohibited NQTL. Payor-funded, medically necessary services in a school setting target goals in the treatment plan, rather than academic goals in a school curriculum, and are provided by trained behavior technicians under the direction of certified behavior analysts. See Table 2.

Table 2.

Distinguishing between Medically Necessary ABA and Educational Supports

Medically Necessary ABA	Educational Supports
Guided by a treatment plan developed by a behavior analyst	Guided by an individualized education program (IEP)
Targets the deficits and behaviors associated with the DSM-V diagnostic criteria	Targets academic goals associated with an educational curriculum
Delivered by a behavior technician under the direction of a behavior analyst	Delivered by a special education teacher or a teacher’s aide

Parent/Caregiver Participation

Another common NQTL found in most payor guidelines is a parent/caregiver participation requirement. Setting aside whether parent/caregiver participation is a best practice, a clinician’s decision to involve parents/caregivers in a treatment plan is a clinical decision based on a clinician’s expertise and observation of the patient and caregivers (Kornack et al., 2017). Parent/caregiver participation and/or the extent of that participation should not be a condition of authorization or continuation of a patient’s treatment. Imagine other medically necessary treatment that is withheld or decreased based on the behavior of someone who is not the patient. The fact that such a requirement or consequence is unimaginable for medical/surgical services is, itself, a clear indication that it violates MHPAEA. In addition, payor efforts to transition treatment to the parents/caregivers clearly violates MHPAEA. The goal of treatment is to ameliorate the patient’s deficits and behaviors, not to transition medically necessary treatment to relatives. Parents and caregivers may supplement medically necessary treatment, but they do not supplant it, and parent/caregiver participation does not relieve the payor of its duty to cover medically necessary treatment of a covered diagnosis, such as ASD.

Progress

Lack of progress is not a proper basis for denial of medically necessary treatment. Of course, sustained lack of any progress whatsoever may be a reason to examine and reconsider treatment goals, consult another behavior analyst, or even change providers (Leaf et al., 2016). It is not unusual, however, for a patient to plateau or even regress temporarily during ABA treatment (Landa et al., 2013). Would a payor deny kidney dialysis to a patient because s/he continued to require it to maintain function? Would a payor suggest that insulin be discontinued because the patient continued to have diabetes? The fact that the answer is a resounding, obvious “no” is a good indication that the requirement of progress in autism treatment is more restrictive than the requirement for medical/surgical outpatient treatment and, therefore, a violation of MHPAEA.

Defining Progress

In a discussion of progress with a payor, an understanding of the definition of progress may be instructive. Lack of regression—sometimes described as prevention of worsening—and maintenance of skills are, in fact, progress that meets the definition of improvement. It is well established that the definition for improvement set forth in the CMS Medicare Benefits Policy Manual (Centers for Medicare & Medicaid Services, 2020) is consistent with generally accepted standards of care. The manual provides for coverage of “[s]ervices [that are] . . . reasonably . . . expected to improve the patient’s condition.” The CMS manual explains how this requirement can be satisfied, stating:

It is not necessary that a course of therapy have as its goal restoration of the patient to the level of functioning exhibited prior to the onset of the illness, although this may be appropriate for some patients. For many other psychiatric patients, particularly those with long-term, chronic conditions, control of symptoms and maintenance of a functional level to avoid further deterioration or hospitalization is an acceptable expectation of improvement. “Improvement” in this context is measured by comparing the effect of continuing treatment versus discontinuing it. Where there is a reasonable expectation that if treatment services were withdrawn the patient’s condition would deteriorate, relapse further, or require hospitalization, this criterion is met. (Centers for Medicare & Medicaid Services, 2020, p. 25)

That is, when a payor suggests reducing or denying ABA based on a perceived lack of progress, the payor must contemplate whether a patient’s condition would deteriorate if treatment were withdrawn. If the patient’s condition would worsen if ABA is reduced or eliminated, then the criterion for progress, or improvement, is met, and reducing or denying ABA would be inconsistent with MHPAEA.

This concept of prevention of worsening is echoed in EPSDT: A Guide for States, which describes the requirement to provide treatment for Medicaid beneficiaries if only to maintain progress or prevent worsening of a condition is described at some length:

A service need not cure a condition in order to be covered under EPSDT. Services that maintain or improve the child’s current health condition are also covered in EPSDT because they “ameliorate” a condition. Maintenance services are defined as services that sustain or support rather than those that cure or improve health problems. Services are covered when they prevent a condition from worsening or prevent development of additional health problems. (Centers for Medicare & Medicaid Services, 2014, p. 10)

Rates

In the Warning Signs guidance, low rates and the process by which a payor determines rates are explicitly highlighted as potential indicators that a payor may not be complying with MHPAEA. The 21st Century Cures Act (2016) also specifies that low rates violate MHPAEA. Low and stagnant rates for mental health providers, including behavior analysts, are increasingly gaining widespread recognition as a critical element in addressing accessibility to mental health services, including ABA. Rates for billing codes most associated with treatment of ASD have lagged behind rates for medical/surgical services, often remaining unchanged for years despite significant medical inflation, increases in minimum wage that put upward pressure on other wages, and costly operational requirements. If a payor’s medical/surgical rates are increased annually but rates for mental health services remain stagnant year after year, the payor’s rate methodology falls short of the requirements set forth in MHPAEA and the Consolidated Appropriations Act (2021), which requires payors to complete a comparative analysis that demonstrates its “standards for provider admission to participate in a network, including reimbursement rates” comply with MHPAEA. A comprehensive, state-by-state report by Milliman cites lower reimbursement rates as a “major contributor to lower network participation” and indicates that primary care reimbursements in 2017 were 20.7% to 22% higher than reimbursement rates for behavioral health treatment (Melek et al., 2017). Such disparity in reimbursement rates is an indicator that payors’ rate-setting methodologies are inconsistent with MHPAEA.

Network Inadequacy

Patients who are diagnosed with ASD routinely encounter inadequate networks that significantly delay their access to ABA. Utilization of out-of-network providers is broadly accepted as an indicator of network inadequacy. Milliman’s report indicated that patients are 4.8 to 5.1 times as likely to use out-of-network providers for behavioral health, including ABA, as they are for medical/surgical health, a statistic that is illustrative of inadequate provider networks and symptomatic of low rates. Such disparity, wherein out-of-network provider utilization is approximately five times higher for behavioral health than medical/surgical services, likely indicates that elements that contribute to network adequacy (e.g., adequate reimbursement rates, efficient credentialing) should be scrutinized by regulators to identify and remedy policies and practices that act as prohibited NQTLs.

Phantom Guidelines

Some improper limits in guidelines are not always enforced by the payor. These phantom guidelines may be treated as “soft limits” by the payor and are identified when a request for treatment authorization disregards a guideline and the service is still authorized and eventually reimbursed. For example, a payor guideline may suggest an hour limit of 25 hr of direct ABA per week, but then a behavior analyst secures 30 hr of direct ABA per week. Likewise, a parent/caregiver participation requirement may be disregarded by the payor upon learning the clinical or practical rationale that precludes adherence to the requirement. Until the guidelines are formally removed, phantom guidelines may still have the effect of imposing discriminatory limits on patients as long as providers perceive them as payor requirements.

Clinical Implications of Improper Limits

Improper QTLs and NQTLs that deny, delay, or limit access to medically necessary ABA interfere with efforts to implement treatment plans that reflect generally accepted standards of care, potentially depriving individuals with ASD of achieving optimal outcomes by diluting ABA to adhere to payor requirements.

For example, improper age limits in payor guidelines preclude patients from accessing medically necessary treatment, putting ABA out of reach for older patients or arbitrarily terminating ABA on a patient’s birthday, regardless of medical necessity. Although research demonstrates that ABA is most effective if delivered at a high intensity in early development (Makrygianni & Reed, 2010), ABA is effective for adolescents and adults with ASD. The National Autism Center (2015) conducted two separate systematic reviews for children and adolescents under 22 years of age and adults 22 years of age and older. Across age groups, ABA-based interventions were determined to have established strength of evidence.

Likewise, payor guidelines that limit treatment hours are likely to deprive a patient from maximizing outcomes. Treatment intensity (i.e., number of treatment hours received per week) has been linked to greater mastery of treatment targets (Granpeesheh et al., 2009; Linstead et al., 2016; Linstead et al., 2017) and higher scores on standardized assessments of adaptive and intellectual functioning (Eldevik et al., 2010; Makrygianni & Reed, 2010). Using artificial neural networks, Linstead et al. (2016) demonstrated that the number of treatment hours accounted for 60% of the variance in mastered learning objectives; in other words, the single variable of treatment intensity accounted for a substantial portion of a patient’s progress, regardless of any patient-specific variables (e.g., age, symptom severity, intellectual functioning, caregiver involvement).

More and more, payors erroneously limit hours for initial and recurring assessments. Such limits jeopardize ABA that reflects best practices when behavior analysts are precluded from conducting comprehensive assessments, which may require 20 hr or more (Council for Autism Service Providers, 2020, p. 21). For example, the initial assessment of a patient may include multiple time-intensive activities, such as “. . . administering assessments and discussing findings and recommendations, and . . . analyzing past data, reviewing records, scoring/interpreting the assessment, and preparing a report, progress report, and/or treatment plan” (American Medical Association, 2018, p. 3). When a payor guideline imposes an arbitrary limit on the number of hours a behavior analyst may use to conduct these activities, a clinician might try to identify an assessment process that adheres to the payor’s hour limits, potentially forgoing a more comprehensive assessment process that reflects best practices. At the same time, a shortened assessment process may miss key contextual variables and lead to the introduction of an intervention that is less effective, diminishing ABA’s overall effectiveness and contributing to an erroneous narrative about ABA’s potential in treating ASD.

Likewise, payor guidelines that limit where treatment can be conducted (e.g., exclude services in schools) may preclude patients from deriving the optimal benefit from their ABA treatment. Generalization is a critical component of ABA. To ensure that skills mastered in one setting generalize across all natural environments, it is appropriate to train and probe skills across different settings, people, and stimuli that patients may encounter in their day-to-day lives (Persicke, 2014). Eikeseth et al. (2012) demonstrated that children with ASD who received ABA in the school setting experienced significant gains in adaptive skills (including communication and socialization) and reduction of maladaptive behaviors as compared to children receiving treatment as usual in the school setting. School-age children spend a substantial portion of their day in school and have peer interactions in the school setting that offer opportunities to work on social and communication goals in the treatment plan that are not always available outside of school. Generalization should not be assumed to occur without explicit treatment planning (Persicke, 2014). As such, for socialization and communication skills to generalize successfully to peers and across settings, it is medically necessary for assessment and intervention to occur in a patient’s natural environments, including, but not limited to, schools, places of worship, and the community.

In addition to generalization across settings, treatment goals include generalization across people. Improper parent/caregiver participation requirements in payor guidelines, however, may discourage clinicians from treating patients whose parents/caregivers are less likely to participate in treatment and may discourage some parents/caregivers from initiating and/or continuing their child’s treatment. Although patient gains in some domains (e.g., language) have been associated with parent/caregiver training, findings vary greatly across studies (Oono et al., 2013). Gains resulting from parent/caregiver participation are often difficult to disentangle from treatment gains as caregiver involvement in treatment almost exclusively occurs in conjunction with treatment (California Health Benefits Review Program, 2016). Although caregiver understanding of ABA and treatment goals may contribute to a patient’s progress, several factors should be noted when considering the extent to which payors and/or behavior analysts rely on parent/caregiver participation in treatment. Parents of children with ASD are more likely to have a diagnosis of depression or anxiety, as well as higher levels of stress than parents of neurotypical children (Blackledge et al., 2009). Furthermore, parent/caregiver availability, education, and preconceptions about treatment differ from one patient to the next. Given the various factors that can affect the effectiveness of parent/caregiver involvement, an individualized approach to parent/caregiver training is likely superior to a uniform model (Forehand & Kotchick, 2002). As such, a payor’s effort to standardize parent/caregiver participation may hinder a clinician from sufficiently individualizing treatment when caregivers are not available and/or not appropriate participants in treatment.

As payors endeavor to determine whether a patient is deriving a benefit from ABA, improper payor requirements for patient progress that disregard prevention of worsening and/or fail to measure progress across all domains may cause clinicians to fade treatment prematurely, jeopardizing a patient’s developmental trajectory and overall well-being and perpetuating practices that have no clinical rationale. If improper payor limits influence clinical decision making, a patient’s entire treatment experience and ultimate outcome has the potential to be adversely affected—from a truncated initial assessment to insufficient treatment intensity for an inadequate duration—ultimately resulting in diluted ABA programs that reflect cynical payor guidelines, rather than evidence-based practices.

Practical Implications—Now, What?

Equipped with a layperson’s solid understanding of complex federal law, behavior analysts are faced with the reality that patients still need ABA while advocates work to eradicate suspected MHPAEA violations. As such, some erroneous guidelines—especially those pertaining to initiating and continuing ABA, such as preauthorization and treatment plan requirements—cannot be disregarded without endangering patient access and payor reimbursement. Other erroneous guidelines, such as location exclusions and hour limits, may warrant additional analysis to see if they are phantom guidelines meant to dissuade providers or actual hard limits.

In an ideal situation, a behavior analyst’s recommendations would disregard improper guidelines where ignoring the guideline would not jeopardize patient access or provider reimbursement, and any subsequent denial by the payor would create the opportunity to appeal and/or complain to the regulator. Until a payor’s guidelines change, however, services that fail to adhere to payor guidelines may trigger authorization denials, audits, claims denials, and various fraught communications from payor representatives. This is the time for advocacy.

Advocacy

As behavior analysts expand their understanding and awareness of MHPAEA and more readily identify improper guidelines, opportunities for advocacy abound. Advocacy is the clean-energy engine that drives MHPAEA forward. Advocacy takes many forms and can range from encouraging patients to appeal denials to joining a trade association and lobbying members of Congress in Washington, DC. Every bit of advocacy makes a difference, manifesting in short-term help for individual patients and long-term, systemic changes.

In recent years, advocates have gained momentum in their efforts to increase MHPAEA enforcement and, in particular, enforcement of MHPAEA in the context of ASD and ABA. The 2022 MHPAEA Report to Congress, Realizing Parity, Reducing Stigma, & Raising Awareness: Increasing Access to Mental Health and Substance Use Disorder Coverage, recognizes the stakeholder engagement of the National Coalition for Access to Autism Services (NCAAS), a nonprofit based in Washington, DC, that advocates for ABA providers and the families they serve (Walsh et al., 2022, p. 42). The report cites stakeholder engagement as informing the decision to create an autism working group, one of only three working groups and the only diagnosis-specific working group (p. 37). As a result of that focus, the report identified limitations on ABA as one of the most common MHPAEA violations and highlighted that limitations on ABA accounted for the most determinations of noncompliance with MHPAEA (Walsh et al., 2022). The 2023 MHPAEA Report to Congress, MHPAEA Comparative Analysis Report to Congress, reiterated the continued focus on enforcing MHPAEA in the context of ABA, citing its commitment to ensuring patients with ASD “can access treatment to improve their lives, including ABA therapy. . .” (Su et al., 2023, p. 43).

In the wake of this heightened enforcement of MHPAEA, behavior analysts have an unprecedented opportunity to free ABA from improper limits and ensure their programs are driven by science, not cynicism. Behavior analysts have a myriad of ways to get involved.

Appeal

Appeals are advocacy for individual patients, one at a time. They are foundational to creating access to ABA and contributing to data on payor practices to help regulators identify potential MHPAEA violations. If a payor declines to authorize all or part of the ABA treatment recommended by the behavior analyst, both the ABA provider and patient have the option to appeal the decision.

Internal Appeal

Federal law requires payors to have an appeals process in place and to make enrollees aware of that process when an adverse decision (e.g., denial or partial authorization) is made (Patient Protection & Affordable Care Act, 2010). The process to appeal, which varies from payor to payor and even from one policy to the next, is described in the payor’s denial letter. Unfortunately, the majority of patients do not appeal. An analysis of 2021 data of ACA Marketplace health plans revealed that patients “appealed less than two-tenths of 1% of denied in-network claims” and that payors upheld 59% of their denials (Pollitz et al., 2023). Although an appeal may not reverse the payor’s decision, data on appeals are tracked by regulators to identify troubling trends and payor practices that may warrant enforcement action.

External Appeal

Patients usually have a right to an external appeal following the internal appeal, but analysis of 2021 data of ACA Marketplace plans showed that only approximately 2,500 external appeals were filed (Pollitz et al., 2023). When a patient begins the process of appealing a denial, behavior analysts should ensure patients and their families continue to the external appeal if the internal appeal is not successful.

MHPAEA Element

If the denial appears to violate MHPAEA, this information should be included in the appeal, along with a request to the payor to explain how the limit complies with MHPAEA, including a “description of the plan’s processes, strategies, evidentiary standards and other factors used to apply non-quantitative treatment limitations (e.g., prior authorization policies, step therapy protocols, geographic restrictions) for both physical and behavioral health benefits” (ParityTrack, n.d.). CMS offers a MHPAEA Disclosure Template to facilitate this request (Centers for Medicare & Medicaid Services, n.d.).

Specific Actions for Behavior Analysts

Specific action to take includes:

• Encourage patients and their families to appeal citing potential MHPAEA violations. Direct them to the payor’s denial letter to understand the appeal process.

• Make patients aware of resources to assist them in filing an appeal, such as those provided by The Kennedy Forum (Carneal et al., 2021), the Council of Autism Service Providers (CASP, 2020), and the Autism Law Summit (Autism Law Summit, 2022).

• Increase awareness of the option for patients to use the MHPAEA Disclosure Template to request information from their payor describing how an NQTL complies with MHPAEA (Centers for Medicare & Medicaid Services, n.d.).

• Provide patients with a letter in support of your recommendations. See Appendix A for a sample letter of support.

• Request a peer review with the payor’s representative. For detailed guidance on peer reviews, see “A Response to Papatola and Lustig’s Paper on Navigating a Managed Care Peer Review: Guidance for Clinicians Using Applied Behavior Analysis for Treatment of Children on the Autism Spectrum” (Kornack et al., 2017).

• Make colleagues aware of their patients’ appeal rights, helpful resources, and the potential for appeals data to highlight troubling payor trends.

Complain

Complaints may be formal or informal, and both serve distinct purposes. An informal complaint involves contacting the payor directly. Outreach to the payor may serve two purposes: (1) When payor guidelines hinder implementation of ABA that reflects best practices, payors should be made aware of these concerns, either by the behavior analyst or through a colleague engaged in payor relations on behalf of the ABA provider; and (2) Regulators who receive formal complaints will often ask if the provider has made the payor aware of the concern, and this informal complaint allows providers to answer that question in the affirmative and move forward with the regulator. Formal complaints to regulators are critical to making regulators aware of MHPAEA issues. Insurance regulators depend on these complaints to identify improper practices (Volk et al., 2022). Regulator websites include options for providers to file a formal complaint.

Specific Actions for Behavior Analysts

Specific action to take includes:

• File a provider complaint with the appropriate regulator. For state-regulated plans, look for complaint options on the website of the state’s department of insurance. For self-insured plans, visit the Department of Labor’s Employee Benefits Security Administration (EBSA) “Ask EBSA” page and choose the “Make a Complaint” option. For Medicaid and CHIP plans, contact your state Medicaid department or email CMS at phig@cms.hhs.gov.

• Register a complaint at ParityTrack.org, a nonprofit affiliated with The Kennedy Forum that is collecting data on trends regarding denials for mental health services, including ABA, to influence legislative and enforcement efforts.

• Ask your state department of insurance to request a comparative analysis of the NQTL. The CAA gives state regulators the authority to make this request.

Join Trade Associations

Many trade associations exist to promote the science of ABA and access to ABA that reflects that science. Trade associations offer behavior analysts the opportunity to meet colleagues who are working on similar initiatives, and they offer a forum to increase awareness of problematic trends. National organizations work to promote ABA more broadly, effect change at a federal level, and create resources for both federal and state initiatives. State organizations are focused specifically on issues affecting their particular state. Some state organizations have established public policy committees to work on state initiatives.

Specific Actions for Behavior Analysts

Specific action to take includes:

• Become familiar with the initiatives of trade associations, including the Association for Behavior Analysis International (ABAI), CASP, NCAAS, and state ABA organizations.

• Join trade associations that resonate with your interests.

• Support trade association initiatives by participating in their surveys and joining advocacy efforts.

Embrace Incrementalism on the Way to Victory

Advocacy is a long game, and many ABA practitioners are not strangers to advocacy or the slow pace toward victory that accompanies it. Fresh from the fight to pass the autism mandates that created access to ABA, behavior analysts, parents/caregivers, elected representatives, regulators, and other stakeholders already have an awareness of ASD and ABA that was largely missing when the autism community first set out to pass autism insurance reform in every state (Unumb & Unumb, 2011). The process of increasing awareness and enforcement of MHPAEA in the context of ABA takes time, but every step forward is meaningful. Recent investment in the infrastructure to enforce MHPAEA is unprecedented and underscores the widespread recognition that compliance with MHPAEA is critical to ensuring access to mental health services informed by science, rather than constrained by cynical guidelines.

Supplementary Information

Below is the link to the electronic supplementary material.

Funding

No funding was received in preparation of this article.

Data Availability

Data sharing is not applicable to this article as no datasets were generated or analyzed.

Declarations

Conflicts of Interest

The authors listed herein do not have competing interests associated with the submission of the article.