By Cori Floyd
Program Associate, Child & Adolescent Health, AMCHP
Ben Kaufman, MSW
Acting Director of MCH Technical Assistance, Association of University Center on Disabilities (AUCD)
Kate Taft, MPH
Senior Program Manager, CYSHCN, AMCHP
Through its implementation of the Autism CARES legislation, HRSA-MCHB funds grantees to improve autism spectrum disorder and other developmental disabilities (ASD/DD) service delivery and to enable all infants, children and adolescents who have, or are at risk for developing, ASD/DD to reach their full potential. This includes training future leaders to improve the health of children who have or are at risk of developing neurodevelopmental disabilities, improving state systems and access to health care and related services for children and youth with ASD/DD, and national research networks and field-initiated research projects to advance the evidence base and best practices.
Technologies such as telehealth, telemedicine and m-Health (also known as Mobile Health) can be used to address gaps in access and can also play a key role in expanding availability of service delivery, building systems, and workforce training. They are being used to address barriers related to shortages of specialists with ASD expertise, geographic and transportation barriers, as well as financial barriers experienced by families. This article highlights how some Autism CARES legislation grantees representing research, training, and state implementation stakeholders are using technology to improve ASD/DD autism education, early detection, and intervention.
Below are a couple of examples of how grantees are using telehealth and telementoring to increase local capacity for best-practice care and access to behavioral health services regional centers:
- Missouri - ECHO Autism for Professional and Workforce Development: Missouri's team began their Extension to Community Healthcare Outcomes Autism project (ECHO Autism) after identifying unmet needs for children with ASD/DD in Missouri (e.g. delayed identification, uncoordinated care, and limited access to proper ASD/DD-related services). They utilized the ECHO model, originally developed by the University of New Mexico, to educate primary care physicians (PCPs) and increase timely, community-based, and culturally competent care. The six-month training program consisted of 12 two-hour training clinics with two clinics per month. PCPs were trained using a multipoint videoconferencing mechanism that connected expert "Hubs" to PCP "Spokes". This system allowed PCPs to participate in case-based learning and be part of a comprehensive learning network. At the conclusion of the program, PCPs reported an increase in self-efficacy, compliance with AAP Autism Screening Guidelines, and high satisfaction with the training program overall. Missouri is now focused on expanding their pilot to multiple sites to continue future research and increase access to healthcare for children with ASD/DD. For more information about ECHO Autism, click here.
- Iowa – Increasing Access to Telehealth for Specialty Care: The Iowa Regional Autism Assistance Program (RAP) with Child Health Specialty Clinics (CHSC) at the University of Iowa has partnered with The University of Iowa Children's Hospital Autism Center (UI) to increase access to telehealth for specialty care. In March 2015, the UI's Autism Center received a four-year multi-state Autism telehealth research grant from the National Institute of Mental Health. This project offers families enrolled with RAP the opportunity to access behavioral health services through telehealth technology based on referrals from any of their 15 statewide CHSC Regional Centers. The applied behavior analysis (ABA) services offered through telehealth include functional behavior analysis, social communication training, and consultation to families to address challenging behaviors. Drs. Scott Lindgren and David Wacker, faculty members in the UI's Stead Family Department of Pediatrics, are the principal investigators for this study. Children in Iowa, Georgia, and Texas are participating in the project, which is a collaborative effort between UI, the Marcus Autism Center in Atlanta, and the University of Houston – Clear Lake. Dr. Lindgren also serves as a Psychology Technical Consultant with the CHSC HRSA ASD/DD state implementation grant; he continues to explore ways to utilize telehealth opportunities for diagnostics and other areas of ASD support for Iowa's underserved populations. CHSC and the UI's Autism Center work collaboratively on various public health infrastructure-building efforts and other projects to better serve CYSHCN in rural areas. These collaborations focus on family support, nutrition, and provider in-service training. For additional information, please contact Peggy Swails or visit Children's Specialty Health Clinic, as well as the University of Iowa's Children Hospital.
Access to expertise represents a barrier to the provision of high quality intervention for children with severe neurodevelopmental disabilities and their families who reside outside of metropolitan or densely-populated areas. Previous research has demonstrated the efficacy of telehealth as a service delivery mechanism to remotely coach parents in various interventions to improve communication and challenging behaviors among children with autism1, 2, 3. Below are examples of efforts to provide parent coaching as an alternative to long waiting lists for services:
- Florida - Coaching Parents in Bilingual Households: iCan Chat – a project of the Mailman Center for Child Development LEND program at the University of Miami (FL) – provided a model for coaching parents on the use of Augmentative Alternative Communication (AAC) in the parents' home language of English or Spanish. The goal of the intervention was to introduce the iPad as an AAC tool with a range of communication apps to children with minimal to no verbal speech (61% with an ASD diagnosis), while coaching the parents on the tool and strategies for use. The intervention was child focused (ages 2-12), using naturalistic strategies, while engaging the child in preferred activities. Participating parents expressed their concerns over AAC use and integration of their home language. Fifty-eight percent of parents preferred the option of having another language on the AAC device/app, citing that the bilingual option would provide the child the opportunity to communicate with non-English speaking family members. On the other hand, 42% preferred the use of an English-only AAC device/app to facilitate communication at school and during therapy, thereby avoiding any extra burden the child would face trying to communicate in two languages. The intervention allowed parents to borrow the iPad for one month. During that time, 40% used AAC only at school / during therapy, while 60% used AAC across environments. Some of the parents reported not using AAC at home because they felt they had established nonverbal cues to communicate with their child. While parents reported many benefits of the iPad as an AAC tool (e.g. ease of portability, promotes literacy skills) and barriers (e.g. technology is too hard, distractions), the project concluded that there was a need for a better understanding of how to apply technology in culturally, linguistically, and developmentally appropriate ways for families from diverse cultural backgrounds. In addition, more education and research needs to be conducted regarding exposure to two languages in children with ASD who use AAC.
- Minnesota - Telemedicine for Early Communication Intervention: Minnesota LEND in collaboration with the University of Minnesota's special education program is examining the effectiveness of telehealth coaching with parents of children who have extremely limited conventional communicative repertoires who engage in socially maintained problem behavior. Parents receive several weekly sessions in which children working with their families are observed. During sessions, coaching is delivered to the parent implementing the intervention via speaker or ear bud; sessions are archived for subsequent analysis and also used as a tutorial to LEND Fellows being taught to implement telemedicine coaching.
To date, the project has served 15 learners (diagnosed with either Rett syndrome or Autism Spectrum Disorder and who experience severe developmental delays) in the implementation of assessment and intervention in early communication skills as an alternative to challenging behavior. Study procedures consist of: (1) pre-assessment of technology and safety for the use of telehealth, (2) parent interview to identify contexts in which idiosyncratic potentially communicative behavior occurred, (3) structured descriptive assessment of contexts and routines identified from the interview, such as observing the child during snack time or when a difficult task was presented, (4) functional analysis if challenging behavior was occurring to identify the maintaining reinforcer and inform intervention (e.g.experimental manipulation of programmed consequences contingent on the challenging behavior), and (5) communication intervention through the use of functional communication training during the identified contexts/routines and the use of nonverbal, aided augmentative and alternative communication strategies. Thus far the project has generated experimental evidence that telehealth applications have been effective in establishing or supplementing live-delivered service with children having significant neurodevelopmental disabilities. Telemedicine application in the area of positive behavior support that involves early communication intervention may have important implications for families whose access to service is limited due to geographic location. Additionally, it may be useful in providing service to families who are on a wait list for in-home delivered service.
[i] Wacker, D. P., Lee, J. F., Dalmau, Y. C. P., Kopelman, T. G., Lindgren, S. D., Kuhle, J., ... & Waldron, D. B. (2013). Conducting functional analyses of problem behavior via telehealth. Journal of applied behavior analysis, 46, 31-46.
[ii] Wacker, D. P., Lee, J. F., Dalmau, Y. C. P., Kopelman, T. G., Lindgren, S.D., Kuhle, J., & Waldron, D. B. (2013). Conducting functional communication training via telehealth to reduce the problem behavior of young children with autism. Journal of developmental and physical disabilities, 25, 35
[iii] Suess, A. N., Romani, P. W., Wacker, D. P., Dyson, S. M., Kuhle, J. L., Lee, J. F., & Waldron, D. B. (2014). Evaluating the Treatment Fidelity of Parents Who Conduct In-Home Functional Communication Training with Coaching via Telehealth. Journal of Behavioral Education, 23, 34-59.