Friday, June 17, 2022
Four best practices emerging from the Vanderbilt Kennedy Center’s (TN IDDRC, UCEDD, LEND) Treatment and Research Institute for Autism Spectrum Disorders (VKC TRIAD) were accepted into the Association of Maternal & Child Health Programs (AMCHP) Innovations Hub Database. The Hub is an online platform that provides maternal and child health professionals and advocates with a variety of resources, including a searchable repository of “what’s working” in the maternal and child health field.
In addition to inclusion in the Hub, the LEND Trainees as Family Navigators model was selected to receive the 2022 Innovation Hub Empowerment and Partnership Award. This award is given to practices that demonstrate meaningful and empowering engagement with partners and was presented to TRIAD’s Nina Harris, M.Ed., at the AMCHP Annual Conference, held virtually on May 26.
Descriptions of each model practice are as follows:
Autism Spectrum Disorder in Primary Care Education
Pediatric primary care providers (PCPs) are most families’ initial points of contact for first discussions about possible autism spectrum disorders (ASD), making crucial decisions about developmental concerns and referral during the first three years of life. Ideally, all children would be screened at 18- and 24-month well visits, and those deemed at risk would receive prompt evaluations and appropriate services. However, for a variety of reasons (e.g., lack of PCP training/comfort, time/financial barriers), many children are still not screened at all: wait times for diagnostic assessment are tremendous, the average age of diagnosis remains above 4 years of age, and post-diagnostic care coordination is often unclear and variable. These factors disproportionately affect racially/ethnically/linguistically diverse, geographically isolated, impoverished, and under-resourced populations. To decrease the age of ASD diagnosis, enable earlier intervention, build inclusive medical homes, and address existing gaps in equitable care, we must train a primary care workforce to better act on ASD concerns in toddlers and coordinate post-diagnostic care within the primary care setting.
TELE-ASD-PEDS Telehealth Evaluation Model
Growing evidence supports telemedicine-based approaches ASD screening and assessment for young children, such as activities to assess infant-toddler social communication skills and remote coaching of parents to complete assessment activities. Through a computationally informed, stakeholder-driven design process, a new ASD tele-assessment tool for toddlers (TELE-ASD-PEDS, or TAP) was developed to be used as part of a telehealth evaluation for young children (under 36 months). In initial evaluation, it was demonstrated that many children with ASD can be accurately identified using tele-assessment procedures, that participating families report high levels of satisfaction with tele-assessment services, and that deploying such systems in rural settings has the potential to dramatically reduce wait times for identification and service. Moreover, subsequent unanticipated broad dissemination of the TAP model during COVID-19 demonstrated potential widespread value to providers and families. This widescale use has allowed VKC TRIAD to evaluate tele-assessment across heterogenous institutions and providers, providing rich stakeholder data to inform aspects of ongoing development and future deployment. The TAP model could address traditional barriers to care access by enabling prompt identification of many young children with ASD within community settings.
Early Intervention Caregiver and Provider Support Services
As the prevalence of ASD has continued to rise, Part C systems have seen an increasing demand for autism-focused diagnostic and early intervention services. However, numerous barriers impact families’ access to care, even for those families actively engaged in their Part C system. Due to the limited availability of diagnostic providers outside of larger cities or communities, access to these specialty evaluations often requires significant travel and/or time spent on a waitlist for an appointment. Furthermore, therapies recommended for most children at the time of ASD diagnosis (i.e., Applied Behavior Analysis, or ABA) provided under the direction of a Board-certified and licensed behavior analyst) are similarly difficult to obtain due to provider availability. Addressing these barriers requires creative approaches that leverage both existing service systems and novel tools for reaching families. This partnership has resulted in innovative programming that provides families access to tele-diagnostic evaluations for ASD and brief, focused education and support opportunities. Additionally, this model aims to support Part C providers through collaborative service provision and ongoing professional development opportunities to continually increase the capacity of local providers.
Vanderbilt Consortium LEND Trainees as Family Navigators
In partnership with the Vanderbilt Consortium LEND program, the TN Cares for ASD Navigation Network at TRIAD developed a Family Navigation framework that attempted to standardize important resources for all families of children less than 5 years newly diagnosed with ASD or global developmental delay. The model involved matching LEND long-term trainees with families that have received a diagnosis of ASD from affiliated providers within the Vanderbilt University Medical Center’s Center for Child Development. The goal was twofold: one, to provide families with needed assistance in navigating complex health care and associated systems; and two, to provide LEND trainees – future interdisciplinary providers who might one day care for these families – the opportunity to experience care navigation and become familiar with health care systems, social determinants of health, and community services. This emerging practice is a framework through which other LEND sites could help trainees not only understand what resources are available, but also give opportunities for direct contact and conversations with families to deepen their understanding of family experiences during this critical post-diagnostic window.
Alt Text: Association of Maternal and CHild Health Programs logo (red AMCHP letters with silhouettes of children and their parents) with a collage of photos, including a group photo of VKC TRIAD staff, a young boy smiling, another little boy sitting in flowers, and a woman answering a work phone.