Understanding the Shifts in Autism and IDD Care Delivery Data to Boost Outcomes Across Care Delivery Settings

Updated on October 17, 2023

Applied behavioral analysis (ABA), the therapy practice of data-driven behavior change, has been a key component of autism spectrum disorder (ASD) and broader intellectual and developmental disabilities (IDD) care since the late 1960s and has proven to be, although one of the youngest, the most data-driven and outcome-oriented therapy practice for these disorders. Since its advent, ABA has rapidly evolved throughout the decades to meet learner demands, undergoing its greatest level of transformation and growth within the past 10 years. Learner in this context is the child or adult diagnosed with autism and related IDDs. While many in the healthcare space might be inclined to use the word patient, we chose to refer to those diagnosed with ASD and broader IDDs as learners as they are not being treated but rather growing and learning.

Since the industry is still relatively new, healthcare trends and data specific to autism and IDD care are not as extensive as other healthcare subsections, making it harder for those within the space to understand the evolving landscape and predict the future of care. However, this is where the boom in healthcare technology is enabling us to get even more insight into the evolving trends than ever before. 

Understanding the Data

Data gathered by CentralReach researchers, compiled from nearly 1,000 ABA providers, aggregates over 1 billion data points to paint a unique and revolutionary picture of the autism and IDD care space. Pulling from 9.2 billion insurance payments, 67 million claims, and 225 million service hours delivered to almost 500,000 individuals diagnosed with autism spectrum disorder (ASD) and related IDDs from just the past 30 months, we’ve identified three key trends that are currently transforming the industry.

1. There is a notable shift from In-Home to Clinic-Based Care

While home-based care remains an option for certain needs, the majority of autism and IDD care seems to be shifting toward clinic-based delivery. Over the past 30 months, there has been an increase in providers delivering care in clinics as opposed to in-home settings. For large providers, those who bill more than $30 million per year, there was an 11 percent increase in clinic-based services while in-home services saw a 22 percent decrease. 

We hear regularly from customers that they are moving towards clinic-based care for many learners due to both the positive outcomes achieved in a controlled environment as well as the efficiencies gained such as being able to provide multiple services, pediatric applied behavior analysis, speech therapy, occupational therapy, all of which require different clinicians back-to-back. In the past 30 months, learners who received clinic-based services utilized 13 percent more services on average. Conversely, learners receiving in-home services decreased their service hours by 17 percent over the same period of time. With learners choosing to continue to tap into more services in the clinic

2. Increased Parent Engagement May Leader to Better Care Outcomes

Parent engagement with both clinic and in-home care notably impacts the care continuum and potential learner outcomes achieved. Roughly 50 percent of adults with an IDD require family or caregiver participation, making parent and caregiver training critical and necessary to the care process. Since these children and adults spend much of their time outside of direct care support, parents and caregivers must be equipped with the proper skills and education to care for their loved ones. However, due to various factors, including the lack of available resources and labor shortages, parent engagement continues to be left out of the care delivery plan, with most ABA providers only utilizing, on average, 30 percent of authorized family service hours. 

CentralReach has seen when family and caregivers are given appropriate training and to support their active role in their loved one’s care plan, learners are less likely to stop services, improving long-term outcomes. For providers billing more than $30 million per year, there was a 20 percent decrease in client churn when parent training was provided and utilized alongside direct services. With the onset of technology-enabled services, training can be made easier for family members while reducing the burden on busy providers.

3. If Providers Improve the Employee Experience It Can Reduce Employee Churn

With 1 in 36 children diagnosed with ASD, there is a high demand for professional care. Yet, labor shortages across the healthcare industry further limit the amount of care professionals available to server the demand. To see improved outcomes, the autism and IDD care industry need to look to address staffing concerns first. 

From 2021 to 2022, employee churn increased on average by over 30 percent, crippling an industry that is critically reliant on clinical staff to meet the high demand for care. While the healthcare education system works to get more students into the space to serve the need, ABA providers must also look inward at how their organization is addressing employee needs to support employee satisfaction and retention. For example, those who heavily invested in onboarding efforts saw a staggering decrease in churn by the one-year mark. The largest providers investing in these areas of employee experience saw a 77 percent decrease in churn while smaller providers with revenue less than $5 million saw a 65 percent decrease, thus improving patient outcomes and overall care delivery.

The Future of Autism and IDD Care Is Now – But Yet to Be Unlocked

As we further analyze the larger scale shifts happening within the autism and IDD care industry, we open the door for real discussion around elevating care across settings and boosting outcomes for the individual. The industry still has a lot of work to do when it comes to modernizing with technology, embracing a post-pandemic world, and meeting the growing care demands of learners with a limited number of providers. However, by listening to the data of those directly impacted by care decisions, we can make the necessary strides to revolutionize the industry and outcomes for the better.

c sullens
Chris Sullens

Chris Sullens is CEO of CentralReach.