The prevalence of autism in the U.S. population continues to rise. Last year, the Centers for Disease Control and Prevention (CDC) released new prevalence estimates, which showed an increase from 1 in 68 children in 2014, to 1 in 59 children in 2018. But that is only part of the story. Consumers with autism spectrum disorder (ASD) use more health care resources and have unique health care management needs. As part of our coverage, we found that this consumer group show costly health care utilization patterns, including inpatient hospitalizations (5.6% compared to 3.2% for the overall population.), outpatient visits (86.2% compared to 70.7%), and medication usage (79.6% compared to 61.8%) (see Annual Health Care Costs For Adults With Autism 55% Higher Than General Population).
The rising prevalence, cost, and complexity have caused payers—both public sector and private sector—to look for new solutions for meeting the needs of consumers with autism, including managed care. Exactly what this shift to managed systems of care means for specialty provider organizations is a new question. For a view from the field, we recently spoke with James Craig, Corporate Vice President for Autism Solutions at Beacon Health Options. Beacon Health is now one of the largest autism services managed care organizations in the U.S., currently managing about 14,000 cases.
Mr. Craig noted that this population has complex support needs for both consumers, caregivers, and families. At least 50% of children with autism have moderate to severe medical comorbidity and are likely to have a behavioral health comorbidity as well. He explained:
Anxiety is common with Asperger’s. Seizures are common with children on the more severe end of the I/DD spectrum. Along with that is a need for coordination on behalf of the caregivers. We are looking to enhance and maximize the use of services we offer families. That may be in terms of understanding resources, advocacy, and access to respite care.
Mr. Craig highlighted several challenges that can be particularly daunting to serving consumers with autism, including access to diagnostics; access to clinical professionals and therapies; rural access to care; and care coordination.
Access to diagnostics—The challenge for health plans and provider organizations is deciding what diagnostic approach to adopt and how to integrate the use of technology in the initial consumer evaluation process. There are many options, but many provider organizations are have not kept up with new advancements in science and technology, either lacking “access” to the newest diagnostics or unable to identify the best practices and criteria for how to use them (see Looking Ahead At Diagnostic Tools For Autism).
Treatment barriers—There are numerous barriers to accessing health care for consumers with ASD including lack of transportation; difficulty in navigating a vocal-based health care communication system (about one third of consumers with autism are nonverbal (see Overview of Nonverbal Autism); and professionals that are unfamiliar with the needs of consumers with autism (see An Autism Reality Check). Provider organizations should augment care teams with professionals specializing in autism, including primary care physicians, psychiatrists, nurses, speech-language pathologists, occupational therapists, Board Certified Behavior Analysts, psychologists and care managers, among others, who have received additional training with the ASD population.
Rural access—Rural areas often have no autism treatment resources. For ASD, telehealth is proving an important resource. For example, remote telemedicine autism evaluations diagnosed children nearly as accurately as in-person assessment, including identifying 75% of the children with ASD (see Looking Ahead At Diagnostic Tools For Autism), as well as dramatically improving wait times (see ECHO Autism Teleconsultation Program Reduced Wait Times Up To Six Months For Highest-Risk, Rural Children). The importance of tech goes beyond just diagnostics, as Mr. Craig explained:
Children with autism are usually in care at most 30 or 40 hours a week, and that leaves them at home, awake and in need of support for another 80 hours. Ideally, these children should have support every waking hour, which almost by necessity requires some kind of technology. Beacon is exploring a number of options, including virtual aids and apps that use games to expand on math, vocabulary, and daily living skills. For example, there is a headband to use neural feedback signals to calm a child if they are agitated. There is an app to track stress response so you can predict if a child is on the verge of an outburst. Another example is Project ECHO, which is a program that uses experts who are in defined medical centers around the country to train primary care in diagnoses and management of complex cases with autism.
Care coordination—Many provider organizations are operating in a silo, with little or no connection to other health care and social service provider organizations. There is an opportunity for provider organizations to build specialized services for consumers with autism that fit into the current payer care continuum by leveraging specialized care coordination models. But this is a heavy and complicated lift for most provider organizations (see Adults With Autism-A Growing Population & Opportunity). Another important overlap for many behavioral health services, autism services included, is what will a future with care coordination demands and alternative payment models look like? This is especially difficult for provider organizations providing autism services-better integrated care coordination is the goal, but the market isn’t quite there yet. Mr. Craig explained:
At this stage of the game, provider organizations are mostly taken up with the demands of providing direct services, billing, and understanding how they fit into the system—leaving health plans to provide most of the care coordination. In the future, taking on more of this care coordination role is something Beacon considers a goal for provider organizations. However, given what we’re seeing with the provider community at this stage, it may not be realistic yet. I don’t think anyone has alternative payment models in this space at this point. The field is just at the stage that it is organizing and consolidating, but it’s definitely possible in the future.
What is Beacon looking for from provider organizations? Two things—applied behavior analysis (ABA) and performance data. Mr. Craig explained that while ABA seems like a standard requirement at this point, there are many different types of service available. Provider organizations need to be able to deliver these services, as well as make sure their clinical teams have the necessary skillset and proper supervision. Mr. Craig noted:
There are various flavors of ABA out there, but basically all using a behavioral approach to work with children, whether verbal, preverbal or nonverbal. For the 80 hours they are home and awake, caregivers need skill development in how they interact with these children. We want to see that there is adequate supervision and caregiver training being provided, at a minimum 10% of the ABA hours. Beyond that, there are social skill groups for parents; center-based programs targeting children in preschool ages; and services in the home and the community as well. Also, providers must be able to provide detailed documentation of services provided, as well as accurate claims. Just because they are good clinically, doesn’t mean their back office works efficiently. Those are the basics.
Regarding performance documentation, Mr. Craig shared list of some important “success metrics” that provider organizations need to keep an eye on, including: time from referral to initial assessment; time from initial assessment to actual ABA treatment; and a treatment plan assessment in 60 days. Beacon is looking for organizations that can show progress on these measures from a baseline.
For more from Mr. Craig, join us on June 4 at The 2019 OPEN MINDS Strategy & Innovation Institute in New Orleans for his keynote address, Opportunity & Innovation In The Autism Market: The Beacon Health Options Strategy.