Throughout the United States, services for school-aged children with Autism have been bolstered by IDEA (the Individuals with Disabilities Education Act). Of the services IDEA has made available, those informed by the science of applied behavior analysis (ABA) are gaining broad recognition as the most successful (Lilienfeld, 2005; Rogers & Vismara, 2008). A review of recent publications, whether it be the National Institutes of Health, the US Surgeon General, opinions of a variety of State and national departments of health, or over 50 years of scientific research, points to the fact that ABA-informed services are the foundation for effective treatment of individuals with Autism Spectrum Disorders (ASD).
At the age of 21, many people with ASD transition into systems where ABA-informed services are few and far-between, and the barriers to receiving such services are high. The needs of these individuals do not cease once they reach 21. To the contrary, a review by Happe and Charlton (2012) published in the journal Gerontology identifies many ways in which the needs of adults diagnosed with ASD are likely to increase over the lifespan. If their needs persist, the applicability of ABA-informed services persists as well. In order to provide the highest-quality of services across the lifespan, new models of ABA-based practices need to be developed that work beyond the school setting. This task is daunting on many levels; the world of adult services exists on framework of funding and oversight that presents challenges not seen in the school setting. However, in 2011 Services for the Underserved Inc. (SUS) committed to taking on this challenge, and many of the individuals we serve have already begun to benefit from this decision.
We were fortunate in our timing. Although ABA is often thought of as a field suited to working with children, many of its guiding principles dovetail well with recent trends in adult services. In recent years, “one size fits all” models of care have given way to an emphasis on person-centered interventions (for a review on Person-Centered Planning, see the NYS OPWDD website www.opwdd.ny.gov). ABA-based services have, by their fundamental nature, always been entirely person-centered. Indeed, this is one reason why they are so readily funded in the school setting through IDEA. Practitioners who use ABA to inform their work take a functional analytic approach to treatment. This means that interventions are chosen based on direct, empirical observations of each individual’s own preferences and values, skills, and relationship with their environment (Hagopian & Boelter, 2005).
Along with the movement towards person-centered planning, there has been a concerted movement towards evidence-based, data-driven interventions. This is another area in which ABA-based services are fundamentally well-suited to provide solutions. Under an ABA-based model, treatments are not only developed based on empirical observations, but are continuously evaluated using data analysis of an individual’s behavior.
Finally, the coming climate in our field is one that recognizes interdisciplinary collaboration as an essential part of high-quality, person-centered care (World Health Organization, 2010), an idea bolstered by the implementation of initiatives such as the Affordable Care Act. Such collaboration requires a natural science-based language and set of principles that crosses disciplines. Within a medical environment, practitioners of myriad medical disciplines collaborate well with one another because they are united by the common language and principles of biology, chemistry, and physics. Much in the same way, at SUS we have found that therapists of many disciplines, direct-service professionals, and care coordinators can collaborate well when their work is unified by the language and principles of ABA.
This last idea is one which may require perhaps the most difficult cultural shift within adult service agencies. Although ABA is a science which informs practice, and therefore a potential tool for uniting many disciplines and providing comprehensive care, it is often used in isolation from other services that an individual may receive. As an agency wishing to integrate ABA into our palate of services, at SUS we have chosen to move away from the mindset of “having an ABA therapist that is available to our individuals,” and instead move toward the more comprehensive goal of “having a range of therapists available, all of whom use ABA to inform their practice.”
Creating such a comprehensive clinical environment requires long-term strategic planning. It is probably not surprising that we have chosen our Behavior Intervention Specialists to take on the role of bringing ABA-informed services to our programs. However, we also recognized early on that this project required commitment from a broader array of stakeholders, from the direct service professionals up through the agency to the CEO and Board. Integrating ABA as a science that informs practice (rather than a practice that exists in isolation) means that in some way, an ABA-based solution must be offered to meet the needs and expectations of all of these stakeholders.
Towards this end, we undertook this project with the consultation of experts within the fields of ABA and residential care, who have helped bring ABA-informed services to other settings. In particular, the leadership of Dr. Brian Iwata has proven essential to our progress; Dr. Iwata is among the world’s foremost researchers in the clinical application of behavior analysis. With his assistance we were able to mount a series of lectures and discussions that generated interest in ABA among our agency’s management and clinical staff. In this way, we learned what these stakeholders needed from us, and addressed their needs by developing policies and procedures that satisfied both their requirements, and the best-practices models common to the field of ABA.
These policies and procedures primed the environment within our agency for the substantial part of our ABA project: bolstering the ranks of our clinical staff with Board-Certified Behavior Analysts, and (more recently) Registered Behavioral Technicians. These clinicians have brought ABA’s functional-analytic perspective to our agency, and with it a person-centered, data-driven, highly-collaborative model of services that has already begun to produce results for the individuals we serve. We would like to close this article with an exciting example of these results.
In recent years, SUS has begun serving a large number of individuals with very complex needs. These young adults came to us from agencies specializing in the treatment of very severe self-injury and aggression, as they were deemed as having behavior “too severe” to be treated in a traditional setting. Following their transition to adult services, SUS was able to use ABA-informed services to not only manage these individuals’ behavior service plans, but also conduct a controlled reduction of the restrictive and intrusive interventions that many of them had grown accustomed to. In one house alone, we were recently able to fade away 1:1 staffing for half individuals living there, while still making progress in reducing their challenging behavior and strengthening their adaptive skills.
In much of the nation, 1:1 staffing is regarded as one of the most restrictive and intrusive services that can be prescribed to an individual. These individuals’ ABA-informed services have not only furthered their clinical progress, but have also given them new measures of independence and dignity. It is with this vision that we continue our roll-out of ABA-informed services, and look forward to seeing similar developments from our colleagues in New York State. As we face the challenge of adapting ABA from the school setting to the adult services setting, we hope to create an environment in which individuals with ASD can continue to access cutting-edge treatments after 21, and across the lifespan.
Rishi Chelminski, BCBA, is Director of Behavior Services, Terence G. Blackwell, BCBA, is Chief Operating Officer, and Louis Cavaliere is Executive Vice President of Developmental Disabilities Services at Services for the UnderServed Inc. For more information, contact Rishi Chelminski at rchelminski@sus.org or visit www.sus.org.
References
Hagopian, L. P, & Boelter, E. W. (2005). Applied behavior analysis and neurodevelopmental disorders: Overview and summary of scientific support. Kennedy Krieger Institute.
Happe, F., & Charlton, R. A. (2012). Aging in Autism Spectrum Disorders, a mini-review. Gerontology. 58:70-78.
Lilienfild, S. O. (2005). Scientifically unsupported and supported interventions for childhood psychopathology: a summary. Pediatrics. Mar; 115(3):761-4.
New York State Office for People With Developmental Disabilities (2014). “Person-Centered Planning.”
Rogers, S. J., Vismara, L.A. (2008). Evidence-based comprehensive treatments for early autism. Journal of Clinical Child and Adolescent Psychology. Jan; 37(1):8-38.
World Health Organization (2010). “Framework for action on interprofessional education and collaborative practice.”
