One Size Doesn’t Fit AllFlexible, person-centered care drives outcomes and family wellbeing

A diverse array of needs requires new thinking and new treatment options to better support people with developmental disabilities.

Given the expanding autism spectrum disorder (ASD) diagnosis and the introduction of parity laws to better support people with intellectual or developmental disabilities (I/DDs), we are seeing a wide range of needs and an opportunity to evolve the standards of care to meet individuals and families where they are. Different client ages, developmental stages, diverse manifestations of ASD and other I/DDs, coupled with additional health challenges mean we need to deploy a broader toolkit. We have to recognize that family environments vary greatly, from associated social determinants of health to language spoken at home, culture, and simply the number of parents and siblings in the household.

For years, the gold standard in treating ASD and I/DD has been Practitioner-Led Applied Behavior Analysis (ABA) with paraprofessionals delivering up to 40 hours of in-home or in-clinic treatment per week. Practitioner-Led ABA can be an effective treatment for ASD ¹, but it’s not the one-and-only ABA solution or necessarily right for every family. Additionally, more recent research shows direct hours over 15 per week are not necessary for good outcomes.²

There are other things to consider when recommending Practitioner-Led ABA. In my experience, for some families Practitioner-Led ABA can be burdensome, costly, time-consuming and unsustainable. It also may not holistically address needs of clients and their families. Defining a treatment plan based solely on “how much time should be spent” doesn’t always drive the best outcomes for an individual and their family, nor does it help keep care affordable and accessible.

“Given the heterogeneity of autism and I/DDs, coupled with family, cultural and community resources, a diagnosis of autism does not directly lead to a single treatment plan, nor is there any single intervention that is effective or even needed for all individuals with autism.”

The Lancet Commission on the future of care and clinical research in autism*

A New Era in ASD and I/DD Care

In contrast to a one-size-fits-all approach, Catalight research and clinical efforts recognize the need for new, effective treatment options. While Catalight’s approach has always been to work with providers to offer individualized, person-centered care, the organization continues to explore and test treatment options developed by its own clinicians and researchers, as well as that from expert partners.

To help improve outcomes and meet families where they are, Catalight offers Parent-Mediated ABA. This treatment method puts parents in the driver’s seat of their child’s ABA care and empowers them to support their child in a way that serves the unique needs of their family. Under the guidance of a comprehensive care team, including a Board-Certified Behavioral Analyst® (BCBA®), parents are trained to help their child with tried and tested ABA interventions. Our research shows in some cases Parent-Mediated ABA is more effective not only for clients, but for parents. Our data finds children in Parent-Mediated ABA do better socially than children who receive ABA through a paraprofessional and Parent-Mediated ABA produces the same improvements in communication and decreases in challenging behaviors. For parents, Parent-Mediated ABA increases parent self-efficacy or confidence which in turn can reduce parents’ stress.³ Parent-Mediated ABA is a treatment model with broad empirical support⁴ and Catalight’s researchers and clinical leaders have published work showing it is as effective as Practitioner-Led ABA.⁵

Alternatives to ABA

Consistent with the fact Catalight does not believe one-size fits all, Catalight offers alternatives to ABA as well as new outcome measures. Backed by more than a decade’s worth of real-world clinical data and the deep experience of a multidisciplinary team, Catalight is redefining clinical pathways so providers can help deliver high-quality treatment that produces measurable and repeatable outcomes and drives greater equity in this category of care:

• Chat is a naturalistic developmental and language-based intervention for children under 6 years. Skilled clinicians teach parents how to support their child’s development of language, social skills and play while addressing challenging behaviors during day-to-day activities.
• Connect is a caregiver-mediated program designed to improve the wellbeing of people with profound intellectual multiple disabilities (PIMD) and their families. With the support of a Connect clinician, parents learn how to teach their child new skills while better connecting to their child’s needs and wants.
• Wellbeing Scales is a self-assessment completed every six months by clients and their families to measure their quality of life.
• Parenting Self-Efficacy Scale is used to help understand the parent’s perception of their child’s treatment and their ability to teach learned interventions.

Catalight also has several other programs in development scheduled to roll out in 2023. The Calibrate program is an ABA modality focusing on dangerous behaviors that cause significant harm and may keep clients from receiving other services, such as day care or other group programs. Like Parent-Mediated ABA, Calibrate provides parents and other caregivers the tools to use when interacting with their child.

In addition to programs developed by Catalight, they also incorporate leading tools and programs by other researchers. For example, The Goal Attainment Scale⁶ developed by Dr. Lisa Ruble, who now serves on Catalight’s research advisory committee, has been adopted and will provide a valuable new metric for outcomes. Another program, developed by the RUBI Autism Network, will be rolled out and is designed to help parents intervene with challenging behaviors that could develop into dangerous behaviors.

Access

The best treatment match for a client and family doesn’t help if families need to wait for treatment. Catalight ensures clients and families receive timely access to evidence-based treatment, including speech therapy, ABA and non-ABA treatment options.

Tailored Treatments for Better Outcomes and Value 

These tools and programs represent some of the new treatment options Catalight is bringing to their clients. The goal is always to provide the highest quality person-centered care, while tailoring treatment to what will drive the best outcomes for each unique individual and their family. But this approach also acknowledges the evolving question around what the most effective ASD and I/DDs treatments are and recognizes one-size-fits-all can be extremely costly – in terms of time, stress and money for families, and overall effectiveness and value.

[1] Yu Q, Li E, Li L, Liang W (2020) Efficacy of interventions based on applied behavior analysis for autism spectrum disorder: A meta-analysis. Psychiatry Investigation 17(5): 432-443.

[2] Rogers, S. J., Yoder, P., Estes, A., Warren, Z., McEachin, J., Munson, J., Rocha, M., Greenson, J., Wallace, L., Gardner, E., Dawson, G., Sugar, C. A., Hellemann, G., & Whelan, F. (2021). A Multisite Randomized Controlled Trial Comparing the Effects of Intervention Intensity and Intervention Style on Outcomes for Young Children With Autism. Journal of the American Academy of Child and Adolescent Psychiatry, 60(6), 710–722. 

[3] Sneed, L., & Samelson, D. (2022). Effectiveness of parent-mediated applied behavior analysis at improving outcomes for parents of autistic children. Journal of Social, Behavioral, and Health Sciences, 16(1), 160–177. 

[4] Anan et al., 2008; Kuravackel et al., 2018; Pickles et al., 2016; Postorino et al., 2017; Rogers et al., 2019

[5] Sneed, L. R. (2021). Treatment efficacy of parent-mediated ABA for children with autism and their parents. [Doctoral dissertation, Walden University]. Walden Dissertations and Doctoral Studies, 10685. 

[6] Ruble, L., McGrew, J. H., & Toland, M. D. (2012). Goal attainment scaling as an outcome measure in randomized controlled trials of psychosocial interventions in autism. Journal of autism and developmental disorders, 42(9), 1974–1983.