For children with autism, there are several competing forces at play that could potentially impact their futures. Legislation mandating coverage1 of applied behavior analysis (ABA) is making this valuable treatment accessible to all. But the rapid explosion in demand for ABA and infusion of private equity (PE) into the industry raises concerns about the limited number of providers and the quality of services2 they deliver. And there are questions about how to transition from today’s fee-for-service model to one focusing on patient-centered care, which is key to making quality a top priority, even in the face of economic pressures.
The Current ABA Landscape
Laws in all 50 states now require health insurance plans to cover ABA treatment. Payors swiftly created networks of ABA providers to meet the demand for services and keep pace with the ever-increasing rates of autism.3 The speed of change is prompting calls for better accreditation4 of providers’ operational processes. At the same time, increasing service demand is resulting in consolidation of many small, local and geographically focused ABA providers. This market has attracted a great deal of interest and an influx of capital from PE firms. Transactions over the past 10 years5 suggest that consolidating multiple practices and driving operational efficiencies could offer a significant growth opportunity.
Getting lost in the fray is how providers can ensure patients achieve the best clinical outcomes. By changing the focus, the industry has the opportunity to set the stage for value-based care arrangements,6 where funding is based on outcome rather than a fee-for-service model, which is the current payment structure for ABA with most health plans. However, even if the industry can agree on changing the focus, a critical component is still missing.
Challenges with Today’s Approach
The current void relates to generally accepted methods of measuring or predicting outcomes for individuals with autism receiving ABA treatment and standards for determining treatment dosages.
ABA is a data-driven treatment approach. Therapists can deliver up to 40 hours of individual treatment per week to reinforce developmentally appropriate behaviors and reduce inappropriate ones that interfere with learning. Throughout, they also collect detailed data to help refine teaching techniques and optimize patient progress. Multiple studies7 show that early intensive behavioral intervention (EIBI) can effectively improve developmental outcomes in young children with autism. Children who received EIBI saw significant improvements in IQ, language and adaptive behavior compared to those who received standard community care or alternative interventions. ABA also has proven effective in teaching a variety of life skills and reducing challenging behaviors in older children and adults with autism.
Determining the right dosage and predicting outcomes is key to ensuring patients receive appropriate care to meet individual needs and circumstances. Today, providers prescribe dosages of ABA utilizing “clinical judgement” – often with little to no training on this topic during graduate school – to recommend a specific number of treatment hours per week. Payors can approve, deny or negotiate the dosage recommendation. Larger health plans often employ ABA clinicians to review and even challenge the recommendations from their network providers.
No independent standard exists for either party to reference. And given the fee-for-service nature of ABA services, there are also conflicting economic agendas between payors and providers. This dynamic creates variability when prescribing and approving a potentially life-changing intervention and offers no clinical lens for identifying what is truly best for the patient.
Lacking outcome standards in a new, rapidly expanding industry begs the question of whether ABA can be potentially ineffective when not delivered in an efficacious and ethical manner.8 Consumers have a right to know which providers are delivering effective treatment and should be less concerned with financial structures or operational processes impacting payors or providers.
Why Overprescription and Underprescription of ABA Should be a Concern
Critics of standardized protocols are right to be skeptical. If such tools were developed by a health plan, interpretation of current research literature could also be intertwined with efforts to reduce benefits expenses. Similarly, a provider-driven protocol could be designed to maximize treatment hours, which would increase revenue generated by insurance claims.
These conflicting economic agendas could prompt payors to look for opportunities to reduce or deny care when they believe providers seek ABA service hours that extend beyond those needed to provide patients with optimal benefits. But providers should care about overprescription too, as it directly impacts consumers in several ways.
For example, if a provider recommends 25 hours of ABA services, yet it was predicted that the patient would achieve the same level of progress outcome with only 20 hours, patients would benefit from fewer trips to the clinic, or therapists visits to their home; reduced co-pays/deductibles costs; and more time to access other therapies or community-based activities. Reducing the number of hours for patients not likely to realize additional benefits would also create more capacity within existing provider practices to serve more patients from their wait lists.
Underprescribing ABA services is equally concerning. Denying services or capping hours where ABA is predicted to be clinically effective should raise flags for payors as well as providers and consumers. A newly diagnosed patient is less likely to achieve the outcomes associated with an intensive, comprehensive ABA program if they do not receive enough treatment hours. These patients may then require ongoing care to teach life skills and reduce problem behavior into their teenage years, and even some may require ongoing support in adulthood.
Models have suggested there are long-term economic advantages9 for payors to avoid underprescription of ABA services, particularly for very young children with autism. In fact, the first significant research study on early intensive behavioral intervention for young children with autism10 demonstrated that patients receiving sub-optimal treatment hours had results more similar to the control group receiving no intervention. In other words, something is NOT necessarily better than nothing when it comes to ABA treatment.
Providers may also contribute to underprescription when recommending a lower service level due to staffing constraints, practice model or parent preferences/availability. In that case, patients should then be referred to another provider to ensure they receive optimal treatment. And payors and families should be informed about the potential limited treatment effect if a higher number of treatment hours are predicted to be more clinically appropriate.
The Importance of Standardized, Research-Based Protocols
Given the ultimate downside of not receiving the proper level of ABA services, a new approach is needed. This is where a standardized, research-based protocol, leveraging industry data, data analytics and partnerships with experts in the field is important. This approach would offer both payors and providers a common, unbiased measuring stick that could be integrated into their existing workflows and processes to determine optimal care and prioritize patient outcomes, independent of their economic agendas.
Such a protocol would reveal cases of both overprescription and underprescription of ABA services. Having expected care trajectories, and establishing research-driven benchmarks for treatment progress, changes the whole dialogue. It helps providers objectively monitor their patients and payors identify high-performing providers in their networks.
Outcome standards are also the basis for designing value-based care arrangements where payors reward and hold network providers accountable for delivering results to their members. In turn, providers are empowered to recommend clinically appropriate services for every patient, while considering social determinants of health (SDOH) that might impact their efforts.
Most importantly, developing protocols and leveraging data analytics tools would enable providers and payors to put the focus where it rightly belongs: on children with autism. Families would have access to greater transparency around ABA service prescriptions, provider quality and the outcomes they should expect, and children would experience long-term benefits from receiving optimal treatment.
Jamie Pagliaro is Executive Vice President & Chief Learning Officer of RethinkFirst.
Footnotes
1. Bernhard, Blythe (2019, October 1). Autism Insurance Coverage Now Required In All 50 States. Disability Scoop. https://www.disabilityscoop.com/2019/10/01/autism-insurance-coverage-now-required-50-states/27223/
2. Sohh, Emily. (2020, October 28). Low standards corrode quality of popular autism therapy. Spectrum News. https://www.spectrumnews.org/features/deep-dive/low-standards-corrode-quality-popular-autism-therapy/
3. Centers for Disease Control and Prevention. Data & Statistics on Autism Spectrum Disorder. U.S. Department of Health and Human Services. https://www.cdc.gov/ncbddd/autism/data.html
4. Council of Autism Service Providers. (2022, May 2). Council of Autism Service Providers Announces Formation of the Autism Commission on Quality [Press Release]. https://www.prweb.com/releases/council_of_autism_service_providers_announces_formation_of_the_autism_commission_on_quality/prweb18644478.htm
5. Larson, Chris. (2022, February 27). Record High Behavioral Health Valuations Force Providers to Drive Growth Through De Novo and Smaller Deals. Behavioral Health Business. https://bhbusiness.com/2022/02/27/record-high-behavioral-health-valuations-force-providers-to-drive-growth-through-de-novo-and-smaller-deals/
6. Frechter, Y., Demirsoy, I., Cameron, MJ, and Wirtjes, P. (2022, February 22). Toward a Value-Based Care Model for Children with Autism Spectrum Disorder. Open Access Journal of Behavioural Science and Psychology, Vol. 5, Issue 1. https://academicstrive.com/OAJBSP/OAJBSP180065.pdf
7. Reichow, B., Hume, K., Barton, E., Boyd, B. (2018) Early intensive behavioral intervention (EIBI) for young children with autism spectrum disorders (ASD). Cochrane Database Syst Rev. (2018) CD009260. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6494600/
8. Leaf, J., Cihon, J., Leaf, R., McEachin, J., Liu, N., Russell, N., Unumb, L., Shapiro, S., Khosrowshahi, D. (2022). Concerns About ABA-Based Intervention: An Evaluation and Recommendations. Article 52(6): 2838–2853. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9114057/
9. Jacobson, J., Mulick, J., Green, G. (1998) Cost-Benefit Estimates for Early Intensive Behavioral Intervention for Young Children with Autism-General Model and Single State Case. Behavioral Interventions. http://featbc.org/downloads/researchpapers/ASD_cost_benefit_1998.pdf
10. Lovaas, O. I. (1987) Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55(1), 3–9. https://doi.org/10.1037/0022-006X.55.1.3
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