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 of both ABA and autism, which can of course be impacted by coverage in media, TV, and movies. Specifically, as related to a more representative sample of the autism community, including, but not limited to those commonly represented in the entertainment industry and media to date, as well as those segments of the autism community whose experiences are woefully underrepresented. In this article I provide some background about advocacy in our community, some associated financial information, various types of advocacy in which we can engage, and some actionable steps we can take moving forward.
Advocacy
Advocacy may involve various different strategies, but generally involves educating people about specific issues, often to generate some kind of desirable change with respect to those issues. There are different matters in any professional field that require advocacy to move the field forward. With this in mind, different professional organizations have different purposes. It’s important to understand the different types of entities and what they do to help advocate for our field and their members.
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, autistic 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 focused associations.
Lobbying
Lobbying may be one element of an effective advocacy effort, and involves attempts to influence specific legislation or policies at the regional, state, or federal levels. Lobbying is a means by which to influence legislation. It can be done by individual companies as well as collectively as industries. When done collectively as an industry it allows people and companies with shared interests, in this case anyone and everyone invested in autism and ABA, to pool their resources and influence laws and the government in a manner that serves their collective interest. A challenge is that it requires significant financial and social capital often beyond the scope of many individuals or even smaller organizations.
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.
- Blue Cross Blue Shield Association (Chicago) — $12,018,300 (6 months in 2021)
- America’s Health Insurance Plans (Washington, D.C.) — $6,410,000 (6 months in 2021)
- Cigna Corp. (Bloomfield, Conn.) — $4,310,000 (6 months in 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
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.
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.
I’ve reached out to The Exchange but to no avail. If any readers have network connections that extend to or can influence pertinent decisions makers there, hit me up!
Concluding Comments
We need to make sure those engaging in advocacy efforts supporting our field, and specifically our professional practice, have our support. This should not be an afterthought. If you can have this ideology and even funding mechanisms built into your organization’s philosophy and structure, all the better.
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, Partners Behavioral Health can help with that.
Brandon Herscovitch, Ph.D., LABA, BCBA-D
Partners Behavioral Health can help with your clinical and business standards, compliance, and outcomes. We can help you scale an ethical ABA practice you’re proud about. Â
References
https://www.opensecrets.org/federal-lobbying/clients/summary?cycle=2021&id=D000021819
https://www.investopedia.com/investing/which-industry-spends-most-lobbying-antm-so
https://khn.org/news/cpi-health-lobbying
https://publicintegrity.org/health/lobbyists-swarm-capitol-to-influence-health-reform
https://www.propublica.org/article/insurance-lobby-has-sturdy-bridges-to-democrats
https://psychiatry.org/membership/join-apa/general-members
https://jezebel.com/health-insurers-are-idiots-possibly-evil-321003
https://www.irs.gov/pub/irs-pdf/p557.pdf
https://www.charitynavigator.org/index.cfm?bay=content.view&cpid=1559
https://lda.senate.gov/system/public
