Implementing Evidence-Informed Strategies in Shared Resources, Family Navigation & Telehealth: Snapshots from the New State ASD/DD Grantees
By Cori Floyd
Program Analyst - CYSHCN, AMCHP
As one part of its implementation of the Autism Collaboration, Accountability, Research, Education and Support (CARES) Act, the Maternal and Child Health Bureau of the U.S. Health Resources and Services Administration (HRSA) provides funding to states to improve access to care through referrals, timely diagnosis and feedback, and entry into high-quality, coordinated care across systems for children with autism spectrum disorder and other developmental disabilities (ASD/DD).[i]
In September 2016, HRSA awarded funds to four states – Delaware, Rhode Island, Washington and Wisconsin – to improve state-level systems of services to integrate care for children and youth with ASD/DD, with a special emphasis on improving care for children and youth with ASD/DD in medically underserved populations. Each state will implement three innovative, evidence-informed models: Shared Resource, Telemedicine/Telehealth and Family Navigation (see Table 1). Implementation of these three models is a unique focus for this round of state grants, and supports the need to address barriers to evidence-based interventions.
Below is a snapshot of how each grantee plans to implement the three evidence-based/informed practices.
Delaware – University of Delaware:
- Shared Resource: The University of Delaware will create a shared resource center called the "Autism Care Team" (ACT) that will be housed in Autism DE. ACT will be the hub for family navigation and case management services targeting primary care practices, early childhood providers and families of children at-risk for or diagnosed with ASD. The development, refinement and coordination of services provided by the ACT will be directly informed by families to ensure that it not only provides effective care coordination but also empowers families and supports their needs.
- Family Navigator: In addition to establishing the ACT, Autism DE will implement the Promotoras de Salud model and identify[M1] a full-time, bilingual, Spanish-speaking Family Navigator to support more communities. They will also expand parent trainings and develop protocols for Family Navigators and care coordination depending on the level of family need.
- Telemedicine/Telehealth: Pilot sites will be selected to offer services (e.g., evaluation and family navigation) through telemedicine and telehealth based on Delaware-specific systems. Based on the pilot results, materials and enhanced trainings will be disseminated to providers and families statewide.
Rhode Island – The Autism Project (TAP):
- Shared Resource: TAP will leverage its position as Rhode Island's family resource center to increase care coordination for children and youth at risk for ASD/DD and their families. TAP aims to strengthen its partnership with the state Department of Health (DOH) Screening to Succeed program. This will allow for continued information sharing by all key stakeholders on resources and programs in Rhode Island serving at-risk populations and others in need of early intervention and support.
- Family Navigator: TAP has extensive experience around family navigation and will hire six navigators to support families, teachers and community members. In addition, TAP aims to strengthen relationships between family navigators, clinics and other community organizations by encouraging these navigators to conduct outreach efforts and trainings and to disseminate resources for clinics and other community organizations in their target communities. The navigators will use face-to-face strategies and mHealth/telehealth technologies to reach these communities regularly.
- Telemedicine/Telehealth: Rhode Island's team will partner with the DOH/Title V agency on its new medical home portal to expand and populate local early identification/ASD resources for families and providers' use. Additionally, live and archived online training will be available to families and providers via tablet, cell phones and laptops. These trainings will highlight the importance of early detection and diagnosis of ASD and the services available to children with ASD/DD before and after 37 months of age. As mentioned, family navigators will use mHealth technologies to communicate with other navigators, families and community organizations.
Washington – State Department of Health:
- Shared Resource: The Autism Spectrum Disorders and Other Developmental Disabilities Project (AS3D) will partner with the University of Washington Medical Home Partnership Project to use the Community Asset Mapping (CAM) model to identify two community teams each project year. These teams will focus on improving developmental and ASD screening and increasing referral rates through community shared resources. AS3D will develop or enhance electronic resource databases and in-person/telehealth-based communication platforms, such as the statewide Children with Special Health Care Needs (CSHCN) Communication Network. AS3D will collaborate with the CSHCN D-70 grant's statewide shared resource for CSHCN – WithinReach – to include ASD/DD resources and improve awareness.
- Family Navigator: AS3D will enhance training for families around shared decision-making, strengthen the referral network and technical assistance available for existing providers of family navigation services and ultimately expand these services for all families statewide. The state Department of Health will contract with the Washington Autism Alliance & Advocacy, Northwest Autism Center and Open Doors for Multicultural Families to create and conduct training modules and provide follow-up technical assistance to organizations and individuals within each region of the state that provide family navigation services. In-person and telehealth trainings will focus on topics such as cultural/linguistic competency, assisting families, implementing models and referring families.
- Telemedicine/Telehealth: AS3D will create a statewide telehealth capacity assessment and subsequent strategic plan to maximize existing infrastructure for ASD/DD screening, diagnosis/evaluation and accessing intervention services. Additionally, AS3D will facilitate trainings around how to use and bill for telehealth to a variety of stakeholders including: primary care providers, neurodevelopmental centers, Centers of Excellence, Applied Behavior Analysis providers, family navigators and CAM communities. Trainings will be conducted using telehealth technology to ensure maximum availability and participation.
Wisconsin – Waisman Center:
- Shared Resource/Family Navigator/Telehealth: The Wisconsin Care Integration Initiative's (WICII) approach will pilot system changes promoting care integration based on family engagement in communities at risk. WICII aims to lower the age of diagnosis and enrollment in services by developing and testing the three evidence-informed strategies in two selected Engaged Community Quality Improvement Project (ECQuIP) sites, disseminating results and determining how to spread and sustain successful strategies. WICII will support the ECQuIP sites by providing training and technical assistance utilizing telehealth/telemedicine strategies with diagnostic experts, family navigators and outreach resources to increase the diagnostic and service capacity of communities. Project findings will be incorporated into the Wisconsin Act Early State Plan.
To enhance peer learning and sharing, this cohort will participate in a "Community of Learners" that serves as a mechanism to share best practices, lessons learned and strategies in a collaborative space. AMCHP's State Public Health Autism Resource Center (SPHARC) is facilitating the Community of Learners to enhance coordination and technical assistance between national partners, faculty experts and the grantee cohort. (See Graphic 1.) This cohort's accomplishments over the next three years can help pave the way for other states to replicate these practices. SPHARC, the state grantees and national partners will work together to share their journey with the larger public health community to continue expanding the use of effective evidence-based/informed practices.
Learn more about the state autism grantees' work at: www.amchp.org/SPHARC and http://mchb.hrsa.gov/maternal-child-health-initiatives/autism.