Waitlists: the dreaded word for families and health plans attempting to coordinate accurate diagnostic testing and treatment for children with autism. Once a child is screened and identified as being at-risk for ASD, the word waitlist becomes an all too familiar topic. Waitlists for full diagnostic evaluation can extend up to 2 years and then there are waitlists for quality Applied Behavior Analysis providers once the diagnosis is received. Early Intervention, being the best chance at meaningful progress for a child, delivered during a vital window of developmental growth, is often missed.
Most children with ASD symptoms receive medical referrals for testing before age two, and statistics demonstrate that children can receive a reliable diagnosis by 18 months (e.g., Autism Diagnostic Observational Schedule (ADOS-2) Toddler Module). Yet, the average age for diagnosis in the United States is age 4 and for children in rural locations the average is even later, 5 years old and beyond. The 2+ year gap when great clinical gains could be made, lessening the overall length and intensity of treatment and long-term care costs, can be addressed through online member engagement strategies aimed at parent education and coaching.
Leveraging Technology to Empower Parents and Deliver Training
The process of waitlists negatively impacts parents’ well-being by increasing stress and anxiety and decreasing sense of efficacy as a parent advocating for their child. Early parent involvement, especially in evidence-based treatment interventions, leads to better generalization and maintenance of skills over time. Research shows that parents indicate that caregiver training is the most effective service contributing to their child’s growth, so what better way to begin the therapy journey than with an online parent education and direct parent coaching platform.
By offering Early intervention support, via parent implementation and training, while waiting for ASD diagnostic testing and enrollment in ABA treatment, health plans enable families with a proactive process for better quality of life and the ability optimize long term prognosis. With a medical referral indicating restrictive repetitive behaviors and deficits in social communication are present and/or failure of an ASD screener such as the MCHAT-R, health plans can fast forward the treatment process, using case management and online education modules during a time when the families need them most.
Parental Engagement in Training
Research shows that parental engagement in training is enhanced if the training is:
- Relevant to the needs of the family
- Facilitated by responsive professions
- Readily accessible (Raulston et al., 2019)
Education on the ASD diagnosis, explanations of treatment options, an understanding of what ABA is, online lessons on ABA principles and techniques that could immediately impact their child’s symptoms has the potential to not only empower the parents and lead to increased parent engagement in active treatment once it begins, but also introduces the child to important skills at an opportune time. Taking this delivery model a step further, and offering live video consultation with Board Certified Behavior Analysts to address aberrant behavior and communication skills enables ABA treatment to begin, regardless of waitlist or geographical barriers.
Overwhelmed with Online Options: Health Plans can Simplify and Individualize the Process Internally
Parents report feeling overwhelmed with the amount and variety of information online and need assistance with where to start. For payors, the simple solution is an evidence-based caregiver training platform, where caregivers can be directed to specific modules pertinent to their child and their symptoms.
By offering on-demand online modules and webinars, directed at specific ABA principles, methods of reinforcement, teaching strategies for communication etc., parents can safely choose clinically effective education to implement with their child. Parents also express needing guidance tailored to their specific concerns regarding problem behavior, ideally in a collaborative way. By offering video and live chat sessions with Behavior Analysts, parents are afforded high quality, individualized care that is easily accessible and effective.
Materials for Areas of Core Deficits
Present materials across areas of core deficits that can be easily understood and implemented:
- Videos on Foundational skills: Communication, Daily living, Play, Social-emotional
- Articles on Navigating Challenging Behavior, reinforcement
- Webinars on Peer Interaction/Social Skills, Transitions
- Printables for schedules, behavior charts, visual cues, data sheets
By offering resources, education, and support to families on waitlists for an ASD diagnosis and/or ABA treatment, health plans enable proactive progress to be achieved and encourage parents to participate from the initial stages of treatment.
Raulston, T. J., Hieneman, M., Caraway, N., Pennefather, J., & Bhana, N. (2019). Enablers of Behavioral Parent Training for Families of Children with Autism Spectrum Disorder. Journal of Child and Family Studies, 28(3), 693-703. https://doi.org/10.1007/s10826-018-1295-x
About the Author
Dana D’Ambrosio, MS, BCBA, LBA
Dana D’Ambrosio leads Clinical Development for RethinkFutures. She is a New York state licensed and Board-Certified Behavior Analyst. She brings over a decade of clinical knowledge, with experience spanning from direct patient care in various treatment settings to utilization and care management within the payor realm. She specializes in the creation and enhancement of technology solutions utilized by providers and health plans, to ensure best practice, high quality, coordinated care and streamlined review processes for all parties. She received a BS from the University of Central Florida and an MS degree in Counseling, specializing in Applied Behavior Analysis, from Nova Southeastern University.