Taking a Stand: Addressing the clinical and ethical issues in the Applied Behavioral Analysis landscapeRead Now
“It’s the Wild West out there”
I’ve heard this statement made in many contexts in my career. I originally heard the Wild West analogy when discussing the state of Applied Behavior Analysis (ABA) services when I joined a Managed Care Organization (MCO) in 2014. Having fielded complaints across the country regarding unethical behavior, there was concern with the existing quality of ABA services. In this context, I completely agree with the sentiment of the statement. From provider to provider, the core science is the same as they work to modify the behavior of individuals with Autism Spectrum Disorder (ASD). Their goals are similar: to decrease maladaptive behaviors and to replace them with socially significant skills. However, the way in which these skills are addressed, and the priority of the goals in each program differ vastly. I wish I could say that ABA is always effective and that everyone receives quality services, but that simply is not true. Given my leadership roles at two ABA agencies and having authorized services from Texas to New Hampshire, I know that there are many clinical issues that arise and that the lack of standards make it impossible to ensure the quality of care. This broad spectrum in the quality of ABA services truly embodies the vision of the Wild West. With its lack of regulation and accountability, there is little anyone can do to ensure quality.
Since the passage of the first insurance mandate for individuals with ASD in 2001, most states have taken on the responsibility of ensuring access to ABA services. However, the laws that were passed and the fidelity of their implementations varied drastically from state to state. I was lucky to be a part of the implementation of ABA services as a result of the Omnibus bill being passed in Massachusetts. The team I worked with had the best of intentions, but we hit a number of roadblocks and some of our greatest concerns have become a reality with the drastic increase in center-based programs. However, in light of weaknesses in the management of ABA programs we are approaching a place where we can begin to address the quality of care. But to accomplish this, we need to develop a new system to monitor quality and determine the level of treatment necessary for individuals receiving ABA services.
Over the years, there have been many developments in how ASD is diagnosed and categorized. Conversely, there has been little advancement in the field of ABA regarding the recommendations for the intensity of services. This is a major concern as ABA treatment is a limited resource and it is often being delivered to those who are not fully benefiting from the service. At the moment there are no clinical standards addressing the intensity of services prescribed to individuals with ASD. There is an aged research study suggesting that 40 hours per week is best practice, but this study is frequently used out of context: The original study by Lovaas used punishment procedures where they would deliver a painful stimulus for undesirable responses, currently an unethical practice. The “40 hours of treatment per week” encompassed all services of a comprehensive ABA program, not just the direct treatment by a paraprofessional. These aspects are commonly misunderstood when applied to service recommendations. The reality is that everyone cannot, and in many cases should not, receive a comprehensive 40 hour program per week. However, there is little research focusing on how to prescribe the intensity of service.
I have seen some try to address this issue, but they are often ridiculed by their professional peers. I have heard prominent individuals describe research into the effectiveness of lower intensity of services as ‘killing the golden goose!' These clinicians represent companies that are financially incentivized to pursue comprehensive services for all clients. By studying the effectiveness of lower levels of treatment correlated with clinical presentation we are threatening the business models of these groups, but this research must be done to move the field forward. The issue is that these providers are using their business models to justify treatment instead of the best practice of using individualized assessments to inform clinical recommendations. In other cases, the family or clinicians from other fields push the Board Certified Behavior Analyst (BCBA) to modify clinical recommendations and treatment plan goals.
Additionally, the business practices of many ABA providers limit access for individuals with linguistic or multicultural needs. Take for example a provider that requires a family to complete an assessment (which is only provided in English) with hundreds of questions that takes a trained clinician hours to complete. Since the provider requires the assessment to be completed prior to initiating services, it immediately puts any family with English as a second language at a disadvantage and the child goes without treatment. Access is also restricted for underprivileged families when provider groups require families to attend group coordination of care meetings at the provider’s office every two weeks. Families that do not have access to transportation or with parents who are unavailable due to work or their own mental health issues are unable to agree to this model of treatment and they are not accepted as clients.
There is little training in the ABA field explaining what the provider’s obligations are or how to navigate these multicultural, clinical and social issues, resulting in unethical and discriminatory practices. No one is addressing this lack of standardization and training. Why is this? Having fielded numerous calls from families unable to access services throughout my career, it always amazes me what providers are allowed to get away with. In addition I am shocked at how little a Managed Care Organization (MCO) can do to address these issues. To avoid conflict with providers, advocates and families over network adequacy, the MCOs, which are supposed to ensure the quality of care, are not willing to implement changes that could improve the system.
As a result, standards and guidelines for care must be established in the ABA provider community itself. My focus is to develop a system that will create recommendations for services and evaluate responsiveness to treatment to ensure that those who benefit most from ABA are receiving it. In addition, I would like to create universal structure for ABA treatment by establishing multiple levels of care under the umbrella of ABA services. One of the major issues with ABA is that the admissions criteria is the same for all presentations of ASD. This is a flaw. There should be clear criteria based on clinical presentation and responsiveness to treatment that should factor into the recommendations for intensity of services. A 4-year-old with severe deficits in all domains who exhibits a high level of maladaptive behaviors should not have the same admissions criteria as a 16 year old who is on par with their peers.
I am fully aware that this is a complicated issue and that there are severe implications for establishing guidelines and standards in a clinical field, but there needs to be more structure in the delivery of ABA treatment. ABA should follow in the footsteps of the many established mental health services that exist today. Take the treatment of depression, opioid addiction or bipolar disorder. Similar to ASD, there is a large spectrum of presentations with each of these mental health issues. However, when you look at the medical necessity criteria for each of the available services, you will see a similar spectrum of treatment that correlates to the severity of presentation. Someone suffering from a drug addiction can be admitted to an inpatient or partial facility, receive community support and/or outpatient services, each of which have a distinct criteria to access each service. I am proposing that we develop a similar system for ABA services.
This system will allow for more targeted treatment towards specific clinical presentations, and it will grant MCOs the ability to ensure the quality of care for each level of service. In addition, the multiple levels of care would support providers in transferring clients between intensities of treatment ensuring access to those who benefit the most from ABA services.
When ABA providers are not held accountable to specific criteria or given the tools to determine clinical recommendations, then yes, it is the Wild West. However, I know that as a community of policy makers, advocates, providers and families affected by ASD, we can create a more accountable and clinically valid system of treatment.
The question is, how do we then ensure the quality of care? The BACB has gone to the extent of qualifying different intensities of service (focused and comprehensive), and there has been a great deal of research showing the variability of outcomes based on intensity of treatment. However, there has been little research into how individual clinical presentation should influence the intensity of services.
This is the issue I want to take on. I am uniquely suited to address this as I am one of the few clinicians with experience in both the provider and managed care fields. In addition, I have had the unique experience of implementing state plans, as I was integral to the creation of the MassHealth level of care criteria, program specification and service definitions for ABA services. I have a strong insight into the different facets of the services available for individuals with ASD, and intend to pursue a resolution to these issues.
I have seen firsthand the impact ABA can have for individuals with ASD. I’ve worked with individuals to do everything from speaking their first words, “mmh bacon” to parallel park a car, to helping a teenager navigate their first relationship. ABA is a transformative service that can develop a large variety of skills. However, there is a side of ABA that few are willing to explore and question: What can we do to protect individuals from harm due to inappropriate clinical practices? How do we help providers make informed clinical decisions? How do we address the limited access to care? How do we improve the timeliness of service delivery? How do we ensure the quality of ABA services received? How do we support clinically valid recommendations for ABA services based on the individualized assessment? These are the questions I would like to answer as I continue my pursuits to improve the state of ABA services. To address these issues we must develop systems, standards, and tools for providers to use; we must drastically increase the access to and quality of ABA treatment throughout the state of Massachusetts. It is my professional mission to advance the field and I will strive to continue this mission with RadBx.
“It’s the Wild West out there”
The last time I heard this phrase was when I presented a previous employer with concerns regarding the delivery of poor quality services and questionable practices. There was no criteria for when or how to terminate services with a client, there were no standards regarding timeliness of treatment delivery, or for evaluating the quality of behavior intervention plans for dangerous behaviors. In addition, there was hardly any individualization in the treatment plans.
I was hoping my findings and recommendations would be met with acceptance and support to improve the existing system, but instead I was met with denial and excuses. It was truly disappointing to be holding the keys to advance the practice, only to be told that there was no reason to invest in these initiatives simply because, “none of our competitors had the answers either.” This acceptance of mediocrity and lack of interest to improve is what drove me to resign. Using the state of the developing provider network as an excuse for poor performance is where I draw the line in allowing people to use the Wild West analogy. I simply cannot stand for the status quo when providers know that improvements are necessary and within reach. I want to be part of a group that is driven by the universal mission to improve the quality of life for others. I want to be a part of a group that is willing to take a stand and support initiatives that are going to help others, regardless of the intrinsic risks of separating yourself from the mediocre pack. I want to collaborate with professionals that understand that we need to push our industry forward. It is this reason that I created RadBx, to advance the field and ensure the quality of care for individuals with ASD for years to come.