By Peter Jurich, Waisman Science Writer
The Waisman Center recently launched two new initiatives — ECHO AAC and ECHO Autism WI — to help improve and expand teletraining services using the Project ECHO® (Extension for Community Healthcare Outcomes) program. Project ECHO (the mantra for which is “All teach, all learn”) uses video-conferencing technology to provide education and case consultation on best practice clinical services, training, and resources for individuals with specific healthcare needs that are difficult to meet locally. The Waisman Center ECHO platform will serve as a diagnostic and treatment training hub to share the center’s expertise on intellectual and developmental disabilities, such as autism, Down syndrome, and cerebral palsy, throughout the state and beyond. This is especially important when access to specialized care and resources are as limited as they are in communication disorders and autism.
“We have patients waiting 12 to 18 months to come and see us,” says Waisman Center speech-language pathologist Catherine Kanter. “And we’ve pretty consistently had a waitlist of about 300 individuals for years.”
Kanter works in the Communication Aids & Systems Clinic (CASC), one of 11 specialty clinics at the Waisman Center. CASC provides highly specialized, cutting-edge augmentative and alternative communication (AAC) for children and adults experiencing significant communication difficulties. AAC includes any tool an individual might use to express themself outside of verbal communication. This can include anything from a picture or word board to a more technologically advanced text-to-speech app or device. A survey by the American Speech-Language Hearing Association shows an increase from 55 percent in 2014 to 70 percent in 2018 of children who receive speech-language services who also require AAC.
“Communication is what makes us human and everybody has a right to that,” says Waisman speech-language pathologist Sarah Marshall. “No disability is too severe for a child to not be able to communicate.”
It is rare, however, to find a specialty clinic like CASC that has both the tools and the expert staff dedicated specifically to treating communication disorders through the use of AAC systems. The Waisman Center’s program encompasses the technology and the expertise needed to complete full communication evaluations and allow individuals to try out current devices and tools in order to determine which best meets their needs.
While that makes Waisman an invaluable resource, this unfortunately also creates the added pressure of being one of the sole sources of those resources in a state of 5.8 million people. This means that families may have to travel several hours for an appointment with CASC.
“What lacks across the state are centers that house all of the tech that the Waisman Center has access to,” Marshall says. She adds that such an “access crisis for individuals who need AAC services” inspired her and Kanter to seek out a way to make Waisman resources and expertise more accessible to people all around the state.
In their search, they came upon Project ECHO. The program was pioneered at the University of New Mexico in 2003 and, since its inception, has expanded to 400 networks and more than 800 ECHO programs in 40 countries.
ECHO AAC has been publicly available to families and clinicians since spring 2020 and ECHO Autism WI will be available to clinicians at the end of July 2020 through the University Center for Excellence in Developmental Disabilities (UCEDD) at the Waisman Center. The UCEDD oversees a broad range of service, training, and outreach programs at the Waisman Center that includes the Waisman Center Clinics.
Marshall says that ECHO AAC was created in response to an increased desire for AAC-related resources and support by community providers, family members, and individuals who use AAC. “The ECHO model provided the opportunity for providers across disciplines to learn new information from experts as well as to engage in case-based collaborative problem solving,” she says. “Communication is not just something that happens during speech therapy, and thus training and support for the entire team and family is crucial to success.”
ECHO AAC allows for an online connection among these groups, so that they may collaborate, learn from, and increase their own capacity for AAC services. With these systems in place, SLPs around the state will be more prepared to service individuals locally and families will have greater access to the care they need — all without having to drive hours to the Waisman Center!
Lindsay McCary, PhD,
director of the Waisman Center Autism and Developmental Disabilities Clinic, says Project ECHO is “kind of a community learning model.” She describes ECHO Autism WI as a collaboration between content experts and practicing clinicians all around the state, where the Waisman Center serves as the hub of experts for sharing research and knowledge. “And then as we develop all these experts in different areas throughout the state, those individuals can continue to spread that knowledge,” she says.
ECHO Autism WI focuses on educating physicians on the early identification of autism in children and on providing specialized care. “ECHO is able to help empower physicians to feel like they have the skills and knowledge to be able to talk about those daily issues with families,” McCary says.
Physicians participate in biweekly ECHO Autism WI sessions to help develop their knowledge and self-efficacy to care for patients with autism who are already on their caseload. “They’re basically going through an entire training program,” McCary says. Topics for these modules vary widely based on the specific needs for individuals with autism on topics such as screening and early identification practices, sleep issues, anxiety and ADHD, safety, and supporting families — to name a few things.
Expanding knowledge, services, and resources to care for individuals with autism is particularly important with the rising prevalence of autism. According to a recent report by the Centers for Disease Control, one in every 54 children in the U.S. is diagnosed with ASD, up from 1 in 59 in 2018. In Wisconsin, the rate is 1 in 60, up from 1 in 71 in 2018 according to CDC’s 2020 report. Waitlists for diagnosis and clinical care can be 18 months or more. Early identification of ASD is crucial for the implementation of targeted interventions that can mitigate symptoms.
“There just aren’t enough autism specialists to serve the number of kids who need care,” McCary says. “And even if we were to significantly increase the number patients we were able to see in the clinic, we would never be able to serve every child.”
The Waisman Center’s ECHO initiatives are not just for healthcare professionals, but can also be an important tool for families. Lindsay Duffy and her daughter Annabelle began their “AAC journey,” as Duffy calls it, with referrals to CASC. Annabelle has a rare condition known as Pitt-Hopkins that has left her severely delayed in speech. To communicate, she uses an eye gaze device — a tablet that allows her to communicate by looking at a series of on-screen pictures that translate to computer-generated speech. She also uses some low-tech devices, too. Thanks to ECHO AAC, the Duffy family’s journey extends beyond the walls of the Waisman Center right into their home where they can access a breadth of AAC-related information and resources right on their computer.
“I feel like more online services/learning opportunities are needed,” Duffy says. “I think many providers and parents are stretched thin on time, and having reliable online resources, where a community can be formed around a topic, is very valuable. Being able to join in a virtual format, takes some of those challenges away.”
As ECHO AAC and ECHO Autism WI take root at Waisman, they pave the way for future ECHO programs in other Waisman clinics as well as a way to branch out and make new research and information more public-facing. ECHO AAC has 19 sessions scheduled for the next fiscal year including four sessions next summer designed specifically for parents.
“It has always been very encouraging to see how many providers are participating in the program and to hear their ideas and learn what is working for them on a variety of topics and experiences,” Duffy says. “It is good for providers to see a parent participating and hear their perspective in this type of learning setting as well.”
The rise in COVID-19 cases Wisconsin requires a flexibility in the clinics and a willingness by healthcare teams to participate in more electronic means of training, support and communication. The ECHO program provides an ideal platform with which to achieve this.
“It’s not just sharing information,” McCary says. “It’s that back-and-forth in that ongoing relationship with these physicians who participate, where they’re actually bringing in their real cases and we’re able to talk through it and problem solve as a group.
“We’re learning from them and they’re learning from us. We’re applying it to an actual case and that’s where the real learning is happening.”