Where We Are and Where We Have Been: Successes and Challenges in ABA

An Interview with Rita Gardner, MPH, LABA, BCBA President and CEO, Melmark

As we have just completed Autism Awareness month, and we are at a milestone for Melmark (the 25^th Anniversary of Melmark New England), we would love to pause and reflect on what ABA has done for autism intervention, what our current challenges are, and how we can best prepare the field for meeting current and future challenges. We spoke with Rita Gardner, CEO of Melmark, about the state of intervention for autism and about her hopes for the future of autism service provision.

Mary Jane: You have been a model of quality service provision for decades. Recently, there have been more discussions about what constitutes high quality service. As concerns have been voiced about the sub-par quality of services that many do receive, what would you say are the hallmark characteristics of high quality service provision? What are the essential components in your view?

Rita: I think the hallmark characteristics start with intentionally defining and creating an organizational framework for your system of care. It has to start with everyone in the organization knowing how services are defined, trained, delivered, and monitored. Then, quality improvements are informed by an individual’s performance. It is a daily process that requires managers to be vigilant, to ensure it happens with treatment fidelity every day.

It is critical to focus on the ongoing training of staff who deliver care at the point of service. Yet, many organizations think it is important to just focus on the initial orientation of staff. That will never be enough to deliver high quality services.

Evaluating the competency of staff also requires continuous performance assessment. We cannot assume that someone with a BCBA has the performance skills to meet the needs of individuals; they must demonstrate them. That means it is critical to design organizational infrastructure that allows for both the appropriate initial skill building and continuous professional development of support direct care staff. Those organizational costs can be daunting; however, without those organizational performance training systems, there is no way to provide ongoing high quality of care.

Mary Jane: We have spoken with you before about the crisis in adult services, and it continues. In your view, what can be done to address the paucity of options for adults, the lack of funding for their care, and the slow progress in this area? Do you have suggestions for our field, for organizations, for individual providers, and for families?

Rita: I remain deeply concerned about young adults and adults with autism. It is especially sobering for those who are most impacted by autism, whose needs require continuous care and specialized expertise. Few behavior analysts are electing to work in residential settings; yet, this is where behavior analytic expertise is arguably most needed. I think many behavior analysts lack the understanding of the range of employment options available within the field. In a worst-case scenario, perhaps there are some who lack the interest, or even the fortitude and resiliency, to provide 24/7/365 ABA services, and I believe it is devastating for our field. The nature of ABA, and a foundational value of ABA, is the idea that we help support individuals to have the highest quality of life possible and to develop a maximal level of independence. Over 27% of autistic individuals have recently been identified by the CDC as having profound autism. There is absolutely not the workforce available to meet that increasing need, nor is there the funding at the state or federal levels. We have so many professionals who think autism is a 9-5 profession that doesn’t include holidays and weekends. We need to recruit another layer of the profession to work in residential settings with those with the most complex behavioral needs. I think that the lack of residential behavior analysts may be coming off as tone-deaf to the needs of the most impacted individuals in the autism community. We need more behavior analysts working in residential settings, with adults, and with individuals with complex behavioral needs. We also need to see far more behavior analysts involved in advocacy and public policy. We need individual providers and trade associations to work together, to join in collaboration, to influence those decision-makers who hold the financial resources that can improve service options for adult populations. We need to use data to better tell the story of what is coming in adulthood, and support families in telling their stories. Finally, it is critical that we do not let ideology get in the way of developing a full range of service options that serves the whole spectrum of the autism community. Right now, many of our individuals are subject to forced choices because the service options and program designs have been so limited.

At the heart of ABA is the commitment to individual assessment and intervention; we need to ensure that every adult with autism gets what they need, and that there are no barriers to ensuring their needs are met.

Mary Jane: One of the issues that has polarized the field recently is the discrepant needs of those whose autism manifests differently. At ASAT, we serve and focus most on those whose autism has deeply impacted them, and who rely on service providers to care for them. This is also true of Melmark. Yet, in the discussions of the field, the interests of these learners are not always represented. How can we ensure that those who cannot advocate for themselves are considered by providers, legislators, and all of us? How can their needs be consistently represented and voiced?

Rita: Again, it comes back to someone being willing to tell the story. It is so sad that anyone would not understand the needs of those who are most profoundly impacted. We need to tell their stories, as hard as some of those stories are to hear. Those individuals in our community are at such high risk when appropriate supportive services are not available. Families are exhausted and at times financially decimated by their individual’s needs. We have to help elevate their voices, and sometimes it is up to the service provider in the system to support that story. I will never understand how providing the most intensive of services, for the most vulnerable population in need of that safety net, has suddenly been so difficult for people to see. We have to tell THAT story over and over, not just the story of other autistic individuals who are able to speak for themselves.

Mary Jane: You have been at the forefront of advocacy for equitable and fair pay for direct service workers. Indeed, you are enacting the values of DEI (Diversity, Equity, Inclusion) in your settings in many ways. Can you tell us how Melmark has approached advancing aspects of DEI in the organization? What lessons are there for other providers in what you have learned?

Rita: I would like to think that is something we have been at for a long time. When given the opportunity by Melmark to develop new services in New England, we based it on many of the original Krentel family’s values and mission. We then informed our new center’s development by current organizational research on how to intentionally design culture, and systems of care. We strongly believe in and have designed our New England division in 1998 (and now all our state divisions) in, a Public Health and Organizational Behavior Management (OBM) framework. From those principles, we believe in access, equity and inclusion, we champion social justice, and believe in evidence-based services and decision making. We use the principles of OBM, knowledge management, and are watching the emerging research to constantly try to improve our system of care. We believe DEI impacts everything, we measure those things at the individual served, individual employee, program, department, and state division levels. We evaluate who we are referred to serve (access and inclusion), the staff that serves them, how those employees are funded for those services (pay equity), how we provide benefits, and how we try to influence all of the same variables in public policy. This OBM data creates an organizational dashboard that informs Senior Leadership and our Board of Directors on next steps to improve in many areas, including key performance metrics that are specific to DEI.

Again, we use organizational data to inform where we need to improve and try to use data to move important stakeholders that are the public decision-makers who develop public policy that impact our services. Sometimes the data tells a story that folks may not want to hear, or a story that is easy to disregard without the data. We just believe it is another way to move the needle. I think the lesson for all of us, as providers, is that in order to keep improving, you have to measure different areas, and always keep learning. It is why we love OBM, which provides the ability to always evaluate organizational processes, to inform improvement. This commitment to continuous improvement is critical to not being stagnant and to always being at the forefront of emerging research and best practices.

Mary Jane: Can we talk about the future of ABA? What are the biggest and most important hurdles to overcome? How do you think we can ensure that effective services will continue to be available to individuals on the autism spectrum?

Rita: I think the hurdles we are facing are enormous. I guess I would start by saying that many organizational leaders don’t understand that you need to infuse ABA into a whole system of care, or are not willing or able to invest the financial resources in the staff at each level of the system, but for us that is what creates high-quality services. Your quality is only as good as one child or adult’s experience, and it is so disappointing when something does not go as planned. Yet, without careful assessment, oversight, monitoring, training, and always believing one can improve, some organizations miss the opportunity to improve someone’s experience, or to ensure ongoing fidelity of treatment and services daily. To commit to this level of service, we have to make sure the resources are focused on the point of care and the staff who provide that care. Again, it is a daunting task to find those resources, especially for adult services that are so underfunded. Unfortunately, I believe that access to care is a huge ongoing public policy undertaking, that all of us must participate in.

Mary Jane: What are the greatest successes of the field of ABA? What have we accomplished and why has it mattered for people with autism and their families?

Rita: We have proven that many individuals, with appropriate ABA services, can live independent and rewarding lives. For others, we can diminish some of the most difficult symptoms in profound autism. Having started in the days of deinstitutionalization, it has been so rewarding to see children access their Special Education within a robust ABA framework, to see that many individuals who previously would never have learned to communicate have the ability to communicate due to Functional Communication Training (FCT) and Augmentative and Alternative Communication (AAC) devices. The ability for them to navigate their environment, communicate their needs at school, work, and home, is simply a quality-of-life issue. In adulthood, the resource challenges are more limiting. Yet, amazing changes have been demonstrated in achieving vocational outcomes and in maximizing independence. ABA has shown that life-changing outcomes occur with individualized intervention. Such intervention is exceedingly complex, and requires the utmost commitment to training, supervision, quality assurance, ethical practice, organizational design, and management. Finally, such outcomes occur when evidence-based ABA interventions are applied flexibly, compassionately, and collaboratively.

Mary Jane: Thank you so much for sharing your insights and experiences with our readers and congratulations on your 25^th Anniversary.

Citation for this article:

Gardner, R., & Weiss, M. J. (2023). Where we are and where we have been: Successes and challenges in ABA. Science in Autism Treatment, 20(5).

 

#BehaviorAnalysts #Centerbased #Multidisciplinary #Residential #SocialWorkers