Advocacy Efforts and The Influence of Public Perception and Coverage Via Media and Entertainment Industry on ABA/Autism Services
Brandon Herscovitch, PH.D., BCBA-D, LABA
ABA practice leadership. Autism awareness and advocacy.
Summary
In this article I discuss how our ability to more effectively advocate for autism and applied behavior analysis (ABA) services can be related to broad scale awareness, acceptance, and accurate perception and representation
Advocacy
Advocacy may involve various different strategies, but generally involves educating people about specific issues, often to generate some kind of desirable change
Professional Advocacy Organizations in Applied Behavior Analysis
Our field’s principal professional associations include Association for Professional Behavior Analysts (APBA) and? Association for Behavior Analysis International (ABAI). Nationally, our primary trade associations are Council of Autism Service Providers (CASP) and National Coalition for Access to Autism Services (NCAAS). Professional associations are based on an individual practitioner/professional membership model (APBA and ABAI), whereas trade associations are based on an organizational/company membership model (CASP and NCAAS). The former typically focuses more on the profession, and the latter more so on the industry. Both have their place, and their interests may often align, but they do sometimes have different priorities. ABAI’s primary focuses have been on scientific and scholarly issues related to ABA and their involvement in public policy issues has been a touchy subject to say the least. Some information on this history may be found here. The other three organizations listed are focused primarily on professional practice and public policy related matters.
Given the structure of the laws and regulations impacting the practice of ABA, a lot of the advocacy that needs to occur is at the state level. While some of the national organizations may be central in state based advocacy and progress, having state based organizations with a central focus on their own regional interests is essential. Using Massachusetts as an example, its primary trade association is Massachusetts Coalition for ABA providers (MassCAP), and its primary professional associations are Berkshire Association for Behavior Analysis and Therapy (BABAT), and Massachusetts Association for Applied Behavior Analysis (MassABA).
Non-Exhaustive Overview of Activities and Accomplishments by National ABA Advocacy Organizations Related to Professional Practice Issues?
APBA, CASP, and NCAAS have dedicated groups of professionals supporting and helping to advocate for and advance the professional practice of applied behavior analysis, with several of these groups having full time staff dedicated to these particular advocacy issues. All three of these associations allocate a significant percentage of their overall resources and funds to these practice and policy based issues, Together, these organizations represent and advocate for the interests of tens and tens of thousands of providers of ABA services, autistc children and adults, and their families, whose services are funded by commercial insurers, Medicaid, and TRICARE, among other funders.?
APBA, CASP, and NCAAS have successfully advocated for change in laws, regulations, and policies that positively impact commercial insurance, Medicaid, and Tricare funded ABA services in many states. They engage with pivotal people and departments in various public and private organizations, including but not limited to, public and private funders, legislators, and regulators throughout the country. Their successful contributions include impacting favorable changes related to licensure, insurance laws, mental health parity, EPSDT, data reporting, funding and service cap issues, among other important matters with respect to ABA services in the healthcare sector. Furthermore, these organizations have hired specialized consultants and allocated funds in various ways to support their respective advocacy efforts.
ABAI submitted the initial applications for implementation of the ABA CPT Codes covering associated costs. They currently have an ABA billing Codes Commission. They, along with BACB, APBA, and Autism Speaks were involved with the subsequent amendments of those codes. Currently, BACB, Autism Speaks, APBA and CASP are members of the ABA Coding Coalition, advocating for appropriate implementation of the CPT codes for ABA services and related policies, and are key contributors in covering the associated costs for that endeavor.?
The Cost of Effective Advocacy Campaigns
There are many elements of effective advocacy and they pretty much all require resources, and specifically money. A lot of money. In considering advocacy efforts related to insurance, Medicaid, and Tricare Funded ABA/Autism Services, as well as perception and support of the field more broadly, it’s important to consider this in the context of funds available to organizations representing the interests of not only ABA providers and organizations, but also those of funders who may have different priorities and interest.?
The table below provides financial information for America’s Health Insurance Plans (AHIP), which is the health insurance industry’s main advocacy group representing the collective interests of its members, as well as for APBA,CASP, NCAAS, and ABAI. These data are from Form 990s filed with the IRS for fiscal year 2019 where possible, or 2018 when 2019 data were not available.?
Let me first review some key terms related to the interpretation of these data. Annual revenue refers to the total amount of money the organization makes in sales (products, services, memberships, events, grants, donations) for the year. Net assets are essentially the net worth of the organization including both liquid and fixed assets, after subtracting liabilities. Liquid assets are commonly cash and things that can quickly be relatively quickly and easily converted to cash, like receivables. Fixed assets generally have a net life of over a year, and typically take longer to be converted into cash, like buildings, equipment, among other things. Liabilities are fundamentally what the company owes.
Health insurance trade association?
Organization (filing year) ? ? ? ? ? ? ? ? ? ? ? ? Annual revenue ? ? ? ? ? ? ? ? ? ? ? ? Net Assets at Year End
AHIP (2019)? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? $68,697,325.00 ? ? ? ? ? ? ? ? ? ? ? $6,690,684.00
Applied behavior analysis professional associations?
Organization (filing year)? ? ? ? ? ? ? ? ? ? ? ? Annual revenue? ? ? ? ? ? ? ? ? ? ? ? ? Net Assets at Year End
APBA (2019) ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? $761,505.00? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? $415,619.00
ABAI (2018)? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ?? ? ? ? ? $5,144,042.00 ? ? ? ? ? ? ? ? ? ? ? ? ? ? $10,955,088.00
Autism/ABA trade associations
Organization (filing year) ? ? ? ? ? ? ? ? ? ? ? ? Annual revenue? ? ? ? ? ? ? ? ? ? ? ? ? Net Assets at Year End
CASP (2019)? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? $668,608.00 ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? $300,160.00
NCAAS (2018) ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? $351,600.00 ? ? ? ? ? ? ? ? ? ? ? ? ? ? ? $135,371.00
Needless to say, having adequate revenue and assets is critical to the stability and sustainability of an organization. With that said, these data illustrate how the health insurance industry is much better funded to advocate for their interests related to ABA services. These data also suggest to me that we need to allocate the funds which are being spent on professional associations in our field to our professional practice and policy
Lobbying
Lobbying may be one element of an effective advocacy effort
In 2021 AHIP spent over $11 million on professional lobbying for their members’ interests. According to Becker's Healthcare report, the following were professional lobbying expenditures to congress and federal agencies from January through June 2021. Note, this is over a 6 month, not a 12 month period, of 2021.?
Compare this to advocacy funds spent on professional lobbying as defined by and reported on the most recent IRS tax filings by professional ABA organizations listed here, which was limited to $220,200.00 spent by NCAAS in 2018. It should be noted, however, that although the above table indicates correctly that APBA and CASP did not spend any money on political campaigns or professional lobbyists, and that NCAAS contributed a couple hundred thousand, all these groups allocated an enormous amount of their available, but unfortunately very limited resources to try to influence public policies and advocacy efforts affecting their constituents, well beyond the numbers listed in their 990s. In fact, year over year APBA, CASP, and NCAAS have allocated a significant majority of their resources toward professional practice advocacy efforts.?
The Influence of Public Perception and Media Coverage on the Field of ABA?
Our ability to effectively advocate for autism and ABA are related to broad scale acceptance and accurate perception and representation of both autism and ABA, which can of course be impacted by coverage in media, TV, and movies.?With this in mind, do you know what the following films and TV shows have in common?
Doctor Strange, Avengers, Thor, Battleship, Apollo 18, TRON: Legacy, Mental, Green Lantern, Ant-man, House, Big Bang Theory, Criminal Minds, Covert Affairs, The Good Wife, Bones, Heroes, Contagion, Eureka, Known Universe, Priest, Prometheus, Blackhat, Castle, Fringe, Terra Nova, Lie to Me, I, Predator, Caprica, The Lost Future.
The answer: They are all projects associated with The Science and Entertainment Exchange.
Why is that relevant?
"The Science & Entertainment Exchange (The Exchange) is a program of the National Academy of Sciences (NAS) that connects entertainment industry professionals with top scientists and engineers to create a synergy between accurate science and engaging storylines in both film and TV programming….. The goal of The Exchange is to use the vehicle of popular entertainment media to deliver sometimes subtle, but nevertheless powerful, messages about science."
In order to maximize advocacy efforts and outcomes, powerful and accurate messaging about our science and the diverse experiences and priorities of those we serve is much needed.
The following is an email I sent to representatives at the Science and Entertainment Exchange on June 14th 2022.?
Hello Ms. Merchant, Ms. Gerbin, and Mr. Loverd,
I'm a doctoral level behavior analyst (behavioral scientist) and I was hoping to learn how I can get my field and our professional organizations involved with the Science and Entertainment Exchange.?
The purpose of this inquiry is to bring more awareness and accuracy to public perception about applied behavior analysis, as well as to one of the primary populations we serve, which is autism.?
I will briefly provide some information about our field, some potential synergies, and my background, and would be very happy to speak further if you see an opportunity for collaboration, or if you have suggestions on how we can move in that direction.?
About behavior analysis
Behavior analysis is the science of behavior which is used to improve the human condition in a socially meaningful way. Its roots extend back to the early 20th century, and one of the more well known behavior analysts, B.F. Skinner is often referred to as one of our field’s founders (often categorized along with Watson and Pavlov). ABA can be used to support people in a variety of different and meaningful ways including, but not limited to areas such as autism, dementia, clinical, education, health and sports, organizational development and management, sustainable practices, technology, military, neuroscience, and others.?
With respect to autism in particular, ABA is mandated to be covered by healthcare funding in all 50 states, with licensure in most, with these services generating billions of dollars of revenue per year, to give you a scope of the size and growth of this field and consumptions of services. You can learn more about the field here: https://www.bacb.com/about-behavior-analysis/, and I can also provide additional details at your request.
(I followed up with this clarification: I said ABA is mandated to be covered by healthcare funding in all 50 states. Technically, autism coverage is required, but ABA is by far the primary intervention provided in this regard, even more so than pharmaceuticals).
Potential synergies
The many ways behavior analysis can help all types of people is poised for exciting, educational, and entertaining storytelling through various genres like science documentaries (i.e. Cosmos), reality TV: (i.e. Supernanny), and medical dramas (i.e. House) as just a few such examples.?
In terms of autism more specifically, it’s exciting to see the entertainment industry providing much needed exposure and generating much needed interest in the area of autism. In the past, shows/movies like Rainman, Atypical, and The Good Doctor have offered some entertaining exposure. More recently, Love on the Spectrum has provided similar exposure. I am very happy to see this, and enjoy seeing social awareness improve as a result of the role the entertainment industry plays.
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With that said, the spectrum is just that, a spectrum. Some people who are neurodivergent/autistic grow to have professional careers and romantic relationships. For many of these people autism is a very special and unique experience they value, and that is meaningful to them and their growth. These are the people who are often portrayed in the media, and I am very excited to see these steps forward. What many don’t see however are individuals and their families from the other side of the spectrum. Individuals who don't effectively communicate, don’t build many friendships, if any at all, and who may engage in extremely severe self injurious behavior. These behaviors can take many forms, such as striking oneself repeatedly and violently, among other forms. As I’m sure you can imagine these behaviors bring much pain and sadness both to the individuals who engage in these behaviors and are themselves living this experience, as well as their loved ones. To be clear I am not saying autism is bad, at least not for everyone. I am however acknowledging the reality that the experience of some people with autism and their families is not necessarily that which is most commonly represented in the mainstream media at this time. Providing exposure to the vastly different and even extreme experiences that these individuals and families live through would be very valuable to many, and could offer some accurate and educational opportunities for consumers of the entertainment industry, and their stories told in an entertaining format that is respectful of the autistic individuals and their families.?
Of course, beyond autism there are exciting stories to be told about how ABA has and can be used in many other realms: improving performance, productivity, or quality of life in the other areas mentioned above - healthcare, corporate culture and productivity, sports, and technology among others.?
A little about me
Dr. Herscovitch earned his Ph.D and M.S. degrees in Applied Behavior Analysis. He is the Director of the Greenwood Interprofessional Autism Center and Clinical Assistant Professor of Applied Behavior Analysis at Truman State University. Dr Herscovitch has extensive leadership experience in the autism and applied behavior analysis fields as clinician, academic, business person, researcher, advocate, and in tech spaces. He owned and operated a multi location Applied Behavior Analysis agency from 2006 - 2019, and taught graduate level courses in advanced ABA and organizational behavior management (OBM). In addition to his work at the University, Brandon’s current interests and affiliations include healthcare/ABA business consulting, SaaS platform co-owner for managing CEs in the industry, co-owner in an industry specific medtech company focused on advancing medical technology in the assessment and treatment of autistic people who exhibit some forms of self-injurious behavior (SIB), and director of a behavioral gerontology (ABA for Dementia patients) practice. Advocacy efforts for ABA and autism have always been an area of interest for Brandon. He was the founding president of Massachusetts Coalition for Applied Behavior Analysis, a not-for-profit trade organization representing ABA providers in MA, was on the national ABA CPT coding provider feedback group from 2015 - 2017, co-author various articles in peer reviewed science journals, and position statements, among others.?
If you made it to the end of this email, I thank you for your time. If you’d be willing to engage in further dialogue about some possible ways we can support your organization and hopefully work together, please let me know. Either way, thank you for your efforts and those of your colleagues at The Science and Entertainment Exchange for your important work.
Brandon?
Brandon Herscovitch, Ph.D., BCBA-D, LABA
https://www.dhirubhai.net/in/brandonherscovitch/
Some comments on costs and messaging in mass media
Public relations and public perception are an important part of advocating for our field. However, production of commercial grade ads can be very costly, northward of $100,000.00. Production of television shows can be in the millions. Air time for these ads and shows can be even more than that. Perhaps we need to look at this strategically and try to get on board with the Science and Entertainment Exchange as one element of our field’s collective advocacy effort.
Some science organizations have relationships or contacts with news outlets allowing for exciting research, books, and programs to be highlighted through those mediums. Unfortunately, despite the meaningful and groundbreaking work we do, our field has very little coverage on social media, television, and the entertainment industry in general, and that which it does have sometimes misrepresents or unfavorably represents our field.?
When we disseminate our stories, I believe we need to show others that we care and are patient centered. This is not of course at the expense of also being family centered, and pursuing evidence based interventions. Evaluating their preferences and how we obtain ongoing consent/assent and measures of preference to the degree possible for all people, verbal and nonverbal alike, profound and otherwise, matters when it comes to selecting goals, meaningful measures, and the procedures we employ. It's essential we are compassionate in everything we do. The people we serve must know that to be our priority, and we need to actively disseminate this work and our priorities in mainstream media. Improving public perception
Actionable Steps For Increasing Funding and Support for ABA Advocacy
As is evidenced by the data above, APBA, CASP, and NCAAS need more financial support. ABA provider companies may consider paying for employee memberships for APBA as a benefit, which they can highlight in their recruitment and retention materials. They may also highlight membership with NCAAS and/or CASP as one way they contribute to improving work conditions in the field for employees and clients alike, similar to how companies are doing this for accreditation bodies like BHCOE and soon CASP.??
Companies may consider holding regular training sessions for staff regarding professional organizations in the field, perhaps highlighting how specific advocacy efforts impact their jobs and the people they serve. These and other activities may encourage employees to contribute to these organizations and their activities. Once the establishing operation is in place the employer may consider offering monthly or ongoing employee match programs to one or more state or national organizations who focus on issues of importance to the staff. Again, these things can be highlighted in recruitment and retention programs.?
It's not just the responsibility of ABA business owners. It's on ancillary providers (billing companies, practice management system companies, business consultants), individual clinicians, academics and academic institutions, and everyone with jobs, businesses, and organizations of any type benefiting from the autism community. Other ancillary ABA providers and companies may consider similarly creative strategies in this regard, perhaps advertising programs where they donate a particular portion of their revenues or profits back into the professional organizations that help generate revenue for their clients and their staff, and ultimately improve the lives of the people we serve.?
If we all contribute 1%, or even .5% of our net income, the numbers add up fast, potentially to the tens of millions per year, and we become better positioned to make meaningful changes and protect insurance, Medicaid, and Tricare funded ABA/autism services, as well as the field more broadly.?
Determining Which Professional Organizations to Support
In determining which ABA advocacy organizations you want to support, the following are some things to contemplate. Consider whether your needs will be better addressed at the federal or state level, or both. Consider whether your needs will be better represented by organizations that are funded by individuals or organizations, or both. Evaluate the organization’s stated mission, history of accomplishments, and prior allocation of resources. For detailed information about a given organization’s accomplishments I would encourage you to visit their website or reach out to their leadership. And finally, consider the existence and structure of any relationships (formal and informal) they may have. These factors will help you determine if and how each organization's priorities align with yours.?
It is my personal opinion that anyone interested in the sustainable and ethical professional practice of Applied Behavior Analysis should at a minimum be supporting APBA by being a member, encouraging employees, colleagues, and students to be members, attending the organization’s events, and donating to its Public Policy Fund. ABA focused companies should also support at least one trade association with a focus on organizational interests, and possibly more than one, again, by obtaining membership(s), encouraging their colleagues with companies to do the same, attending their events, and donating to advocacy funds they may have. If you don’t currently have the funds to provide substantial support, do what you can now, and make it part of your future spending. Other organizations that historically prioritize other matters in the field are also important to support, but there is a pressing need to focus on our professional practice since that is a primary contact point with the people we serve and a basis for much of our field’s economics.?
Concluding Comments
We've had the best of the best at the helm for a while. Some very important change has happened thanks to these organizations and individuals – changes that allow master’s level behavior analysts to practice independently and ABA providers to bill health plans and other third-party payers, for example. Without these people, there would be unquestionably and meaningfully less funding, effective services for the people we serve, and fewer jobs. Still, there is so much more that needs to be done, and the stakes seem to be getting higher. Enhancing coordination between state and national organizations, increasing public policy efforts, and securing more favorable media coverage, will require a substantial influx of money and resources. If we just assume that the handful of people, brilliant and dedicated as they may be, working on a shoestring budget are going to save the industry we're kidding ourselves, and soon our individual efforts to save a few bucks here and there will result in us all having even less. Less for ourselves, and less to reinvest in our employees, researchers, patients, families, and the ABA and autism communities in general.?
This will take a coordinated effort and advocacy of various types, including but not limited to lobbying, education, and media coverage to garner further understanding and support of autism and ABA are necessary. Furthermore, this awareness and support for our science and practice can help in broadening engagement and funding opportunities with other populations. To accomplish this, work and support are needed at state and federal levels, and coordinated advocacy by past, present, and future service recipients, individual clinicians, companies, as well as professional and trade organizations - all without breaching antitrust laws of course.??As one of my behavior analyst friends said to me, we need to change hearts and minds. I believe the arts and entertainment is a good way to do that.
In closing, the goal is not to start from scratch, but instead, to identify the needs and work on a coordinated effort among many of the people and organizations such as APBA, the Science and Entertainment Exchange, and others in and out of our industry who already have a demonstrated history of success.
So, when you are confronted with laws, regulations, policies, or actions that serve to hurt our profession and most importantly the people we aim to help, remember, at this point it’s not what more our professional organizations can do, it’s what each of us can do individually to better support our highly skilled, exceptionally invested industry advocates leading these organizations. Click on these links today and become a member, purchase sponsorships, make donations, and register for events, lots and lots of events. Do this today.
If you share this interest some things you can do to support this effort include:
If you don’t have a state trade association that currently engages in lobbying or other advocacy efforts and would like help setting one up, you can reach out to me. I was the founding president of MassCAP and would be happy to help if I can.??
References
ABA practice leadership. Autism awareness and advocacy.
2 年Just dropping this related link here. Thanks Jonathan Mueller for bringing this to my attention in a post, and as I understand it Judith Ursitti, CPA and The Council of Autism Service Providers to his attention https://www.beckerspayer.com/payer/the-house-always-wins-health-systems-face-worst-finances-in-decades-as-payers-rake-in-record-profits.html?utm_medium=email&utm_content=newsletter