An Interview with Drs. Amanda Laprime and Deborah Napolitano

Barriers to Behavioral Services for Individuals with Autism and Intellectual and Developmental Disabilities in New York State: An Interview with Drs. Amanda Laprime and Deborah Napolitano

Conducted by Adriane Miliotis, MA, BCBA, LBA
Association for Science in Autism Treatment

Drs. Deborah Napolitano and Amanda Laprime have been tireless advocates for applied behavior analysis in New York State. As part of their roles within the New York State Association for Behavior Analysis (NYSABA), they have advocated for change at the state level to NY’s behavior analyst licensure law, which currently includes a scope of practice restriction that limits behavior analysts to working with only people with an autism diagnosis. Recently, they spoke with me to discuss their advocacy efforts and explain the state of licensure in NY.

Adriane: By way of background, can you give our readers a quick summary of how and when behavior analysts first became licensed in NY?

Dr. Napolitano: In 2013, the New York State Legislature passed an autism insurance mandate that required insurance companies to pay for applied behavior analysis (ABA) services delivered by a Board Certified Behavior Analyst (BCBA), along with other provisions related to the diagnosis and treatment of autism. The New York State Department of Education Office of Professions (NYSED OP), the regulatory body that governs all professional licenses in NY, immediately weighed in and said that the mandate couldn’t be implemented as written because there was no licensure for behavior analysts in NY. It quickly became clear that NY would have to develop a license for behavior analysts in order to implement the already passed autism insurance mandate. The New York State Association for Behavior Analysis (NYSABA) and other partners began working with our state legislators to enact licensure for the profession. Our original intent was to enact a licensure law much like the Association of Professional Behavior Analysts (APBA) Model Behavior Analyst Licensure Act. However, most legislators viewed the licensure act as directly tied to the autism insurance mandate. As a result, the sponsors of the licensure bill were only able to convince the legislature to pass the bill if it included language that limited the scope of practice of behavior analysts to providing services to people with an autism diagnosis. While we recognized that this would be highly problematic for service providers, students, and families, as well as the field as a whole, we also knew that holding up the insurance mandate would be worse. At this point, it was clear that there would be no bill if it did not include the scope of practice restriction and that it also would likely be impossible to stop the momentum from groups pushing for the scope of practice restriction, so we shifted our efforts to ensuring that the language of “related disorders” was included in the scope of practice. Unfortunately, NYSED interpreted this language to mean only those related disorders indicated in the DSM-IV (e.g., PDD-NOS). The licensure law, including the scope of practice restriction, ultimately passed in 2014 and was implemented almost immediately.

Adriane: Thank you for sharing that history with our readers. What is the current state of the licensure law, including the scope of practice restriction?

Dr. Napolitano: In 2016, a bill was introduced in the Senate and Assembly to remove the scope of

practice restriction. For 5 years, NYSABA, with significant support from partners (e.g., The University of Rochester, The Brain Injury Association of New York), parents, behavior analysts, and professionals from other disciplines, worked under the guidance of a passionate and dedicated lobbyist to get the bill passed. Finally, at the end of the 2021 legislative session, the bill was brought to the floor and both houses voted unanimously in favor of the new licensure law! Currently, we are waiting for our new governor, Kathy Hochul, to sign the bill into law. Once she signs it, there will be up to 18 months of regulation revisions before the new scope of practice and related educational and supervision requirements can be enacted.

Dr. Laprime: While we wait for Governor Hochul to sign the bill, and for up to 18 months that follow, behavior analysts in NY must still practice under the restricted scope of practice. This means that Licensed Behavior Analysts (LBA) can only provide services to individuals who have a prescription for ABA along with a confirmed autism diagnosis.

As the licensure law is currently written, there are limited situations in which it is not necessary to be an LBA to provide “behavioral” services. The law identifies these as “exempt settings”. In these settings only, an LBA is able to practice separate from his or her license. Ironically, by putting aside the license and working in these locations, behavior analysts are then able to work with individuals with a variety of diagnoses.

Adriane: But individuals with autism can still receive services, right? How has the scope of practice restriction limited their access to services?

Dr. Laprime: Yes, technically individuals with autism can receive ABA services from an LBA. However, the

scope of practice restriction has created barriers to training and recruiting behavior analysts, which in turn has negatively impacted even those with an autism diagnosis. It has become very challenging to recruit BCBAs from other states. In addition, we struggle with keeping newly certified behavior analysts in our state because the education and supervision only focuses on a single population, whereas in other states behavior analysts have much more diagnostic and professional flexibility. Data on the number of behavior analysts for every 100 individuals with autism in New York, published by Zhuang and Cummings (2019), demonstrated that there was a large capacity problem as compared to all of the other states in the North East. Additionally, data on the growth of new behavior analysts were analyzed by NYSABA, and demonstrated a decreasing trend in new professionals as well as a disparity between the growth curve in New York and the rest of the country. Although there are some concentrated areas within the state that have larger pools of practicing behavior analysts, the ratio is still not sufficient and in many cases large rural areas have few or no behavior analysts. This has created inconsistencies in our state in terms of service availability which have been highlighted in numerous discussions with stakeholders. We hear about long waitlists for behavior analysts across the state and pockets of the state where behavior analysts are almost non-existent. So, even though individuals with autism technically can receive insurance-based ABA services, there are simply not enough providers to implement those services. When a state is known to not have enough providers, we then see other challenges follow. Limited providers may inevitably result in the potential for price gouging or prioritization of cases that reimburse at a higher rate, which would have a near disastrous impact on the Medicaid funded ABA service that will go through October 2021 (as the current Medicaid funded ABA services will reimburse at a rate that is 1/3 of the rate of privately funded insurance). Limited providers can also lead to a situation where practitioners have excessively large caseloads and subsequently, decreases opportunities to supervise technicians on their cases. Lastly, this may inevitably leave practitioners in a situation where they are vulnerable to working outside of their scope of competence, as they may be the only provider that can see a certain case, or the only provider in their entire geographical region.

Adriane: So the scope of practice restriction impacts those even with a diagnosis of autism. What about behavior analysts who work in an exempt setting? If they can work with anyone regardless of diagnosis, what’s the challenge there?

Dr. Laprime: The scope of practice restriction has a negative impact on consumers of behavior analysis in so many ways. While the provision for exempt settings benefits the individuals without an autism diagnosis who receive services in those settings, it can create challenges when they leave that setting. When they go home or go to other programs in non-exempt settings, they cannot receive ABA provided by an LBA. We see that all the time with school settings, for example. A BCBA might be supporting an individual with intellectual and developmental disabilities (IDD) in an educational environment as part of the IEP, but there is no ability for an in-home ABA team to support that individual at home. We see it in the hospital as well, a patient with a diagnosis other than autism may have a BCBA overseeing a behavior plan at their residential or day program, but if they come to the hospital, our team cannot support them or modify the plan as our setting is not exempt, which often leads to acute behavioral challenges. We know the negative impact on a child, family, and system when a collaborative and consistent approach to behavior intervention cannot be provided.

Adriane: The scope of practice restriction has clearly been terrible for behavior analysts and consumers of behavior analysis services alike. Are there any other issues with the current licensure law?

Dr. Napolitano: Yes! As it’s written now, the educational and supervision experiences required for licensure in NY do not match those of any other state or those of the Behavior Analyst Certification Board (BACB). They require that practice hours can only occur with individuals with autism who have a prescription for these services. The primary way for students to ensure that they are meeting this requirement is to work within the insurance-based system, where both a diagnosis and prescription are also required. This negatively impacts both students and consumers. For students, they lose out on receiving training across a wide breadth of diagnostic populations. For consumers, individuals with autism in settings that cannot guarantee both a diagnosis and prescription (e.g., group homes, schools, day programs, transitional or vocational programs) get less access to behavior analyst trainees.

In addition, higher-education programs have restrictions for teaching content specific to autism (as part of the scope) leaving little room for additional courses that may interest new behavior analysts (e.g., applications to individuals with brain injury, ADHD) or special areas of behavior analysis (e.g., aging, child welfare). Ultimately, this created the circular argument that behavior analysts are only trained to work with autistic individuals and therefore a scope of practice change is not appropriate.

Dr. Laprime: Given the unique educational and supervisory requirements, it is nearly impossible to bring in behavior analysts from other states, especially doctoral level behavior analysts. This further limits the opportunities for growing the supervisory and advance practice structure that so many other states have in place for behavior analysts at this time. Personally, I relocated here in 2019 for a faculty position at the University Of Rochester Medical Center (URMC). Though I was already licensed in another state and had post-doctoral experience that met all the requirements for licensure in NY, it took over a year and numerous challenges at the state level to procure my license. Many times I felt like I would not be able to stay and would have to move my family again if I could not get the license. It was an emotional and challenging journey to say the least. There are numerous reports from masters and doctoral trained behavior analysts who try to move here but are denied the license or are told they need to redo courses or supervision hours to meet NY’s requirements. This is directly related to the requirements around autism and prescriptions that align with the scope of practice restriction. We have heard, and NYSABA has recently obtained data that suggest that across the country, many professionals would like to come to NY to work, but do not given our scope of practice restriction, and the related challenges acquiring their license.

Adriane: We’re glad that you were able to obtain your license and decided to stay. Given how far-reaching the detrimental effects are of the scope of practice restriction and related supervision and education requirements, why did it take 5 years to pass the bill that will ultimately remove the restriction?

Dr. Napolitano: Many agencies and stakeholders tried for a long time to move the legislation introduced in 2016 to remove the restriction on the scope of practice. Ultimately, the solution became a grass roots approach and required numerous hours of dedicated advocacy. It was also a confusing issue for some until the impact of the restriction was felt globally. For example, many behavior analysts do provide services almost solely to autistic individuals. This meant that the restriction did not immediately hinder their work and may have even helped. Over time, however, providers started to recognize that the licensure law and the associated regulations were making it very difficult to become a behavior analyst in New York. Additionally, families began to ask why they could not easily hire and retain behavior analysts, despite having excellent insurance.

Many years and many individuals together finally began to move the needle. In particular, a very dedicated group of professionals and families devoted much time to educating lawmakers about the profession and about the impact of the scope of practice restriction. Additionally, large service systems began to feel the effects of the restriction. As more and more behavior analysts demonstrated the efficacy of the science in settings such as hospitals and other service settings, administrators began to ask questions about why the other individuals in their settings could not be supported by behavior analysts. Also, educational programs in New York began to recognize that establishing a program in the profession was quite difficult and recruitment of students was very hard in part due to the restriction. This resulted in program cohorts that were quite small at a time when the profession has a significant lack of providers. Other professionals and associations also joined in the efforts and expressed concern about their inability to find professionals to support individuals who don’t have autism (as well as those who do), such as psychiatrists and psychologists, among others. Finally, other associations weighed in with letters of support, such as the Brain Injury Association of New York, Prader-Willi Syndrome Association, and Voices of Reason. This large grass roots push, paired with the sponsors of the bill plus years of relationship development with law makers to help them understand the profession and the impact of the restriction finally resulted in unanimous passage of the new licensure bill.

Adriane: What a monumental effort! What is the current state of Medicaid in NY and how does the scope of practice restriction impact that?

Dr. Laprime: Medicaid-funded ABA services are intended to start in October 2021. While we are excited about the opportunity to serve individuals with Medicaid coverage, we already lack the capacity to service the currently eligible individuals with autism in NY. The addition of an estimated 42,000 Medicaid-enrolled children who qualify for the benefit will result in huge system gaps and health disparities that will be even further highlighted if we don’t remove the scope of practice restriction and increase the provider pool to be able to serve what we anticipate will be an influx of new service requests.

Adriane: As we wrap up, can you share some lessons that you have learned from this experience?

Dr. Napolitano: The swell of grass roots advocacy, relationships fostered over many years with professionals, families, law makers, and change agents, and the guidance of a very good lobbyist were the key components that made this happen. With regard to speaking up about this issue, we learned that in so many cases it wasn’t that families didn’t care, it was that they were already fighting for so much. Being strategic about how their time was used, ensuring they understood their impact, and working with a few key advocates really made a difference. We began to view this as we might an election and every vote (voice) counted. Surprisingly, the pandemic occasioned some new opportunities for us. Prior to the shutdown, traditional advocacy required people to travel to Albany to speak with legislators. Once everything became virtual, we were able to attend weeks long advocacy meetings with almost the full legislature. This allowed for concentrated time with them, education around the issues, and development of relationships. Finally, there is nothing that can replace being sure to use every connection and opportunity as thoughtfully as possible. You truly never know who is going to connect to the right person or open the right door.

Dr. Laprime: I’m a newer member of the team working on advocacy here in NY State, but what I can say is that it is essential to build motivation from key stakeholders who don’t even recognize the issues at hand. Behavior analysts have an immense ability to provide a unique and specialized service, and we have to be both thoughtful and direct in labeling what we do as applied behavior analysis at every juncture. When I first came to URMC, ABA was not even recognized as a specialty practice with privileges. We had to have the tough conversations and not shy away from them. Once the stakeholders where I work heard what ABA was and how we could implement services, the “asks” came in throws. At that point, we were able to engage leadership about the unique challenges our field faces with the scope of practice restriction in terms of limiting our services and abilities to support patients in the hospital environment (a non-exempt setting). Those tough conversations, the teaching about our science, and showing the efficacy with patients we could support, led to immense advocacy from our system, as well as modeling for other systems how to build similar systems and advocate for change.

The last thing I can say is that I have been privileged to participate in many professional discussions at the state level since coming here. In every single conversation I am in, whether it be a smaller hospital department meeting, or a larger state meeting, I bring up the scope of practice restriction as a barrier for individuals with IDD. It is shocking to see how few people really understand ABA and the work of a BCBA, and even more so, how few know about the scope of practice restriction and the impact for individuals with autism and other behavioral needs. One key piece of advice I would give behavior analysts who are interested in advocacy is to partner with people who know how to analyze large sets of population data, complete predictive models, and understanding return on investment and fiscal analysis. Large data sets and cost analysis will help your cause and provide a forum for building an advocacy case!

Adriane: Wow! This is such a complicated and involved issue that negatively impacts so many. Thank you for taking the time to help our readers understand both the history and the current state of the scope of practice restriction issue. It’s clear we wouldn’t be where we are today without your efforts. On behalf of all behavior analysts and consumers of behavior analysis services in New York, thank you for your work in successfully delivering a bill to remove the scope of practice restriction and related issues to Governor Hochul’s desk. Hopefully we’ll be able to speak again soon with an update regarding her signature.

Reference:

Zhang, Y. X., & Cummings, J. R. (2020). Supply of certified applied behavior analysts in the United States: Implications for service delivery for children with autism. Psychiatric Services, 71(4), 385-388

Citation for this article:

Miliotis, A. (2021). Barriers to behavioral services for individuals with autism and intellectual and developmental disabilities in New York State: An interview with Drs. Amanda Laprime and Deborah Napolitano. Science in Autism Treatment, 18(10).