Parent/Caregiver Training and Participation as a Condition of Insurance Authorization
It is the position of MassCAP that parent/caregiver training or participation should never be used by insurers as a basis to reduce, deny, or delay treatment for individuals with autism (Kornack, Herscovitch, & Williams, 2017). While we wholeheartedly support parent/caregiver involvement and parent/caregiver training where clinically appropriate, predicating service authorizations on a required level of involvement or requiring specific reports of parent/caregiver involvement likely imposes a more restrictive requirement on medically necessary autism treatment than on substantially all other outpatient treatments. As such, parent/caregiver participation requirements can be discriminatory, interfere with professional judgement, and create barriers on access to care for the autism population. Further, it is our understanding that such restrictions and requirements violate, where applicable, Medicaid’s Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) mandate, the Mental Health Parity and Addiction Equity Act (MHPAEA), the Americans with Disabilities Act (ADA), and the Patient Protection and Affordable Care Act (ACA), as well as Massachusetts autism insurance statutes mandating medically necessary care.
Parent/caregiver training should be a clinical recommendation, made to the family by the supervising clinician, taking into consideration his or her clinical judgment, relevant research, governing laws/regulations, and applicable professional standards and requirements, including those of the Behavior Analyst Certification Board (BACB). When indicated, the clinician should work with parents and caregivers to develop clinically appropriate training that takes into account individual circumstances including limitations to participation by the parent/caregiver. A parent or caregiver’s non-participation in parent/caregiver training should never be a basis for an insurer to reduce, delay, or deny treatment to a patient. With respect to parent/caregiver training, the insurers’ responsibility is to reimburse for clinician-recommended parent training according to the terms of its policy when medically necessary.
This position statement will address four common policies or practices used by insurers for imposing parent/caregiver training or participation requirements (e.g., minimum units, required number of objectives, measurement of parent/caregiver behavior, narrative description of parent/caregiver involvement) as a condition of authorization of medically necessary treatment. This position statement articulates the view that any requirements relating to parent/caregiver training or involvement should not be a condition of authorization for coverage.
Some insurers require parent/caregiver training as a condition of authorization. Some insurers also require objectives and/or data reporting on parent/caregiver behavior, rather than the patient behavior.
Requiring parent/caregiver training is discriminatory.
Parent/caregiver training requirements are discriminatory in nature and wholly improper where used to limit, delay, or deny medically necessary care to a covered patient. The decision about the nature and extent of parental involvement is a clinical judgment that should be made by the supervising BCBA based on individualized patient factors. A parent or caregiver’s ability to participate in parent/caregiver training will vary greatly based on a number of factors, including his/her availability for services, education level, occupation/employment status, language, and childcare for other children. These requirements disproportionately impact individuals with low income, those with a disability themselves, and those with competing obligations, such as work and/or other children. Per the BACB Professional and Ethical Compliance Code for Behavior Analysts, “behavior analysts do not engage in discrimination against individuals or groups based on … any basis proscribed by law” (p.5, 1.05.d). The argument that these factors be explained as a rationale for not having performed parent/caregiver training is equally discriminatory. The specific circumstances that influence the ability of a third party to participate in the treatment plan are not a matter that affects the medical necessity of a patient’s treatment. If a patient needs treatment and is benefitting from treatment that should be the focus.
Requiring parent/caregiver training violates state and federal laws.
Behavior analysts are expected to conform to the laws under which they operate. Imposing parental/caregiver participation requirements as a condition of access to treatment constitutes a discriminatory treatment limitation imposed on a service with respect to a mental health condition contrary to the intent of the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008 (MHPAEA) as amended by the Patient Protection and Affordable Care Act. MHPAEA generally requires that the “treatment limitations on Mental Health or Substance Use Disorder (MH/SUD) … are no more restrictive than those on medical or surgical (med/surg) benefits” U.S. Department of Labor (2016). MHPAEA further prohibits treatment limitations imposed solely on a service for a mental health condition. 78 FR 68245. Insurers do not impose similar parent training requirements on coverage of services for outpatient medical and surgical procedures. Insurers’ imposition of parent/caregiver involvement requirements also violates the Massachusetts autism insurance law (ARICA). Mass. Gen. Laws ch. 32A, § 25. ARICA requires coverage of ABA treatment for an individual’s autism spectrum disorder (ASD) and does not allow for delay, reduction or denial of medically necessary care for a covered beneficiary on the basis of a parent’s or caregiver’s participation in such treatment. A recent settlement between Tufts Associated Health Plans, Inc. and the Massachusetts Attorney General makes clear that parent participation requirements that may reduce access to care are improper (Tufts Settlement Agreement). As set forth in the Tufts Settlement Agreement, “[t]he AG’s Office alleges that Tufts violated the state’s autism insurance, mental health parity and consumer protection laws when it inhibited member access to treatment for Autism Spectrum Disorder, specifically Applied Behavioral Analysis (ABA) therapy. Tufts allegedly violated these laws by implementing policies that required parental presence at every ABA appointment to obtain coverage and prohibiting coverage for ABA therapy provided in daycare or preschool settings” (Attorney General of Massachusetts, 2016).
The goal of treatment should be patient progress, not parent/caregiver progress. Insurers implementing parent/caregiver participation requirements improperly shift focus from medically necessary, legally required treatment.
With respect to applied behavior analysis services, the obligation of an insurer in Massachusetts under ARICA is to provide coverage for assessment and treatment, including specifically habilitative and rehabilitative care, to individuals of any age diagnosed with ASD. It is axiomatic that a patient’s autism diagnosis is predicated upon the patient’s behavior and clinical presentation, not that of a parent/caregiver, and the patient should be assessed and treated accordingly. The goal of treatment is to improve the patient’s functioning. Parent/caregiver behavior, particularly for younger children, may be identified by the clinician as one of various environmental conditions to be considered during the assessment and treatment of the patient’s behavior, but is not itself a measure of patient progress. The provider’s responsibility is to treat the core deficits of autism regardless of parent/caregiver participation, and not to train a parent/caregiver to deliver behavior analytic treatment. The goal is to change and improve the patient’s behavior and functioning, not merely to provide a parent/caregiver with techniques for managing existing behaviors. Insurer requirements that have the intent or effect of shifting the responsibility of providing medically necessary treatment to the parent/caregiver are both clinically inappropriate and legally impermissible.
Some insurers indicate that the goal of parent/caregiver training is to transfer the onus of medically necessary service delivery from the qualified health care provider (QHCP) to the parent/caregiver.
The parent/caregiver is not a replacement for a professional clinician.
The role of the parent/caregiver is not to function as a replacement for a qualified healthcare clinician acting with appropriate qualifications to deliver medically necessary services. As with any healthcare treatment, the selection and delivery of procedures/services is reserved for those medical professionals with the skills and training to carry out such procedures/services, not parents/caregivers. Insurers do not contend that parent/caregiver training is sufficient to prepare caregivers to take over the provision of other medically necessary services, nor should they do so here. As underscored by state licensure and national certification requirements, the safe and effective delivery of ABA requires extensive knowledge, training and experience, and supervision protocols. Requiring persons to perform these functions under the wholly unsupported theory of “skills transfer” poses serious risks for the patient. Furthermore, a parent/caregiver’s personal relationship with their child may impact their objectivity in delivering medically necessary services. Additionally, a parent/caregiver’s behavioral interactions with a child may need to be a subject of treatment addressed by an independent behavioral professional. At the very least, a parent/caregiver operating in the capacity of provider supplanting medically necessary services constitutes a multiple relationship. Per the BACB Professional and Ethical Compliance Code for Behavior Analysts, “Behavior analysts must always be sensitive to the potentially harmful effects of multiple relationships… (p. 5, 1.06.b.). In other words, even if the parent/caregiver was qualified to deliver professional services to their own child, they would be prohibited ethically from doing so.
It is MassCAP’s position that the goal of clinically indicated parent/caregiver training should be to supplement, not supplant medically necessary services. The appropriate role of parents/caregivers (and other third-parties) in treatment is not to be trained to somehow take over delivery of services, but to receive appropriate guidance to help support the services, particularly with respect to generalization of skills (i.e. to program for the persistence of change over time, across environments, and to other behaviors, following, and in the absence of medically necessary services where they were taught). This approach continues the focus on the behavior of the patient as a measure of success, as evaluated across clinically and socially relevant conditions, including parent(s)/caregiver(s) as applicable. This approach helps support parents/caregivers to more effectively carry out parent/caregiver responsibilities, but reserves the responsibility of medically necessary services for qualified healthcare professionals.
Some insurers try to pressure providers to substitute parent/caregiver training hours for medically necessary treatment hours.
Authorizing fewer 1:1 treatment hours than what has been recommended based on medical necessity can result in adverse clinical consequences.
Accepting a negotiated, lower number of treatment hours than clinically recommended as medically necessary undermines treatment and is a disservice to the patient, the provider, and, in MassCAP’s view, to the insurer itself. Paramount, of course, are the interests of the patient. This type of authorization by ad hoc compromise is highly detrimental and discriminatory and would never be countenanced with another medical condition. Consider a physician who prescribes amoxicillin at a dosage of 3x/day for 7 days; then the insurer says to the provider, “we will authorize what you requested if you reduce the dosage to 2/x day, and substitute the reduced dosage with Aspirin.” This would not be appropriate and simply would not occur.
Per the BACB Professional and Ethical Compliance Code for Behavior Analysts, “Behavior analysts have the responsibility to advocate for the appropriate amount and level of service provision and oversight required to meet the defined behavior-change program goals” (p. 8, 2.09.b). It is MassCAP’s position to encourage insurers who disagree with clinical recommendations to provide clinicians with a denial, in writing, detailing the clinical justification for why the recommended services are not medically necessary for the patient. This allows the clinician and, more importantly, the patient, to challenge the decision via an appeal.
Accepting a negotiated number of treatment hours negates the parent/caregiver’s right to appeal.
Just as with a physician, a BCBA makes his/her recommendation based solely on the patient’s condition and his/her knowledge, training and experience as expert in his/her subject matter having full knowledge of the patient. As such, any departure from the clinical recommendation, without justification, is not acceptable. Insurance personnel who disagree with clinical recommendations should provide clinicians with a denial, in writing, detailing the clinical justification for why the recommended services are not medically necessary for the patient. This allows the clinician, and more importantly, the patient, to challenge the decision via an appeal.
Some insurers have erroneously referenced the BACB’s Applied Behavior Analysis Treatment of Autism Spectrum Disorder: Practice Guidelines for Healthcare Funders and Managers (2014) as the basis for parent/caregiver training requirements as a condition of authorization of medically necessary treatment.
The citations referenced from the BACB’s practice guidelines to justify parent/caregiver training as a condition of authorization are taken out of context and do not support the conclusion that parent/caregiver participation is a mandatory component of effective ABA.
Some insurers have selectively quoted the BACB’s practice guidelines to justify parental participation requirements. While the Guidelines discuss parent training, they further make clear that “these guidelines should not be used to diminish the availability, quality, or frequency of currently available ABA treatment services” (p. 5) and “…while family training is supportive of the overall treatment plan, it is not a replacement for professionally directed and implemented treatment” (p. 37). Consequently, while parent training can be an important, reimbursable service, subject to a practitioner’s clinical judgment, nothing in the BACB’s practice guidelines justify imposing parent training requirements as a condition of authorization of an individual’s treatment.
In summary, MassCAP fully supports BCBAs’ authority to make clinical recommendations surrounding parent/caregiver involvement and parent/caregiver training and view the training of parents, caregivers, other relatives, teachers, co-workers, employers, and others as having a potentially positive impact on the life of an individual affected by autism. MassCAP does not support insurers or other funders imposing parent/caregiver training requirements as a condition of authorization of services for an individual. Parent/caregiver training should be a determination made solely by the clinician, measurement or reporting of parent/caregiver behavior or performance should never be a condition of authorization, and the patient’s behavior and progress should remain the focus of treatment.
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: Author.
An Act Relative To Insurance Coverage For Autism. https://malegislature.gov/Laws/SessionLaws/Acts/2010/Chapter207)
Behavior Analyst Certification Board. (2014). Applied behavior analysis treatment of autism spectrum disorder: Practice guidelines for healthcare funders and managers (2nd ed.). Retrieved from http://bacb.com/wp-content/uploads/2015/07/ABA_Guidelines_for_ASD.pdf
Behavior Analyst Certification Board. (2014). BACB Professional and Ethical Compliance Code for Behavior Analysts. Retrieved from https://www.bacb.com/wp-content/uploads/2017/09/170706-compliance-code-english.pdf
Kornack, J., Herscovitch, B. & Williams, A. L. (2017). A Response to Papatola and Lustig’s Paper on Navigating a Managed Care Peer Review: Guidance for Clinicians Using Applied Behavior Analysis in the Treatment of Children on the Autism Spectrum. Behavior Analysis Practice. https://doi.org/10.1007/s40617-017-0192-x
Attorney General of Massachusetts. (2016). Settlement Reached with Tufts Associated Health Plans over Restricting Access to Treatment for Autism Spectrum Disorder. http://www.mass.gov/ago/news-and-updates/press-releases/2016/settlement-reached-with-tufts-associated-health-plans-over-restricting-access-to-treatment-for-autism-spectrum-disorder.html
U.S. Department of Labor. (2016). Warning signs: Plan or policy non-quantitative treatment limitations (NQTLs) that require additional analysis to determine mental health parity compliance. Retrieved from https://www.dol.gov/sites/default/files/ebsa/laws-and-regulations/laws/mental-health-parity/warning-signs-plan-or-policy-nqtls-that-require-additional-analysis-to-determine-mhpaea-compliance.pdf
 This position statement was prepared by members of the MassCAP Board of Directors. These statements represent the position of MassCAP after thorough review and consideration of behavior analytic research and with understanding of the Behavior Analyst Certification Board’s Professional and Ethical Compliance Code.
 This basic principle extends beyond autism. Consider a patient with asthma who receives frequent monitoring of medications, treatment, and testing by his/her physician. Certainly, parent/caregiver participation in following best practices could be essential to patient progress. Now, contemplate an analogous case of a patient with asthma living with a parent/caregiver who smokes. Treatment for the patient’s asthma should not be denied due to the parent/caregiver’s behavior, despite its potential adverse impacts on the patient. Medically necessary care should not be denied on the basis of the acts or omissions of a third party.
 The focus of treatment should be the amelioration of symptoms associated with the individual’s diagnosis of autism as identified in the Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM-5; American Psychiatric Association, 2013), as these are the criteria upon which the diagnosis, and subsequent eligibility for services, are predicated. Such services should persist so long as the symptoms persist.
 This is particularly inappropriate for older teens and adults who are also covered by the mandate.
 An important distinction in terminology: Parent/caregiver training may be conducted to supplement medically necessary services or supplant those services. When supplementary, parent training provides additional support so that parents/caregivers can maximize the benefits of medically necessary services in their role as parent/caregiver, and to increase generalization of medically necessary services to people, places, and activities outside of the medically necessary treatment sessions. Alternatively, when the focus of parent training is to shift what is supposed to be a similar level of care as would otherwise been provided as medically necessary services to the parent/caregiver, and/or to have the parent/caregiver eventually substitute service which would have otherwise been provided by or under the medical professional, that would be parent training to supplant medically necessary services.
 Generalization goals may involve parents/caregivers, but also other persons with whom an individual comes into contact with on a regular basis. Goals should be drafted in keeping with the patient-centered focus of medically necessary treatment. For example, a goal might provide: “Across 2 people, including at least one parent/caregiver, and two settings, [Patient] will [behavior change] by x from baseline levels of Y. Progress will be evaluated on [date]”. The focus is on the patient’s behavior, not the parent or other individual.