Move Knowledge, Not People
When parents first receive a disability diagnosis while struggling to manage challenging behavior, they urgently need information and support. Yet, because of a shortage of behavioral specialists, they often end up waiting in a stressful and isolated limbo. The UW Haring Center for Inclusive Education's use of Project ECHO® seeks to change that.
Initially developed in medicine at the University of New Mexico, the hub and spoke ECHO® framework connects a team of experts with families. Then, through a series of interactive learning exchanges, families receive individualized case-based support. The model also builds in a social network component, allowing families to support one another.
Sue Adelman, whose now-grown daughter has Down syndrome, brings lived experience to the Haring Center Project ECHO® team. "As a parent, a lot of times you feel incapable, like you always have to talk to a specialist to get information on interacting with your own child," she says. "When you have a child with extra stuff going on, you can feel isolated and fearful, thinking, 'Why is my kid doing this?' You think you're the only one.'"
A Pandemic-Proof Intervention
For many parents of children with disabilities, the pandemic exacerbated both taxing behaviors and feelings of being overwhelmed and isolated as they tried to respond. As the project got underway in 2020, its original funder, trustees at the Arc of Washington Trust Fund, asked what needed to be changed to adapt to the emerging COVID-19 situation. The answer? Nothing.
"We started on time," says Katy Bateman, the project lead and a research scientist and behavioral health expert. "Our new phrase is that ECHO® is COVID-resistant. Our attendance was 81 percent, which is incredible. Families told us that when they were locked down this was a source of consistency. Every week in the chaos they could count on this program to help them address challenging behaviors."
Our new phrase is that ECHO® is COVID-resistant. ... Families told us that when they were locked down this was a source of consistency. Every week in the chaos they could count on this program to help them address challenging behaviors.
Whether a family lives in the east, west or middle of Washington state, rural or urban, all they need is an internet connection to participate. "It opens up this idea that we can move knowledge and not people," says Haring Center Director Ilene Schwartz. "We don't need to take people whose lives are already stressful and ask them to add one more thing. When we do these ECHO® programs, they run at 7 p.m. and people are with their kids, sometimes feeding them. In addition to zero travel time, they don't have to get childcare, which is a huge expense."
The Critical Role of Parents as Experts
From sleep issues to tantrums to potty training, the ECHO® approach provides strategies families can implement immediately and then a follow-up some weeks later to see what needs fine-tuning. "It creates confidence and competence in parents," says Adelman. "They interact with professionals, learn vocabulary and what they are working towards, and gain a hopeful foundation for how to move forward with their children."
In addition to community-building and lecture-style teaching, each week, a family gives a presentation about a behavior they find challenging, including how they've tried to address the issue. "First, other parents and caregivers have an opportunity to ask questions," says Bateman. "After that, professionals ask questions. Then, we move to recommendations, leveraging parent knowledge. Someone might say, 'Two years ago, we tried this.' After that, it goes to the hub team, including a board certified behavior analyst, a special education teacher, a UW faculty member, and a parent of a child with a disability."
Following the session, the family receives summary information and resources specific to their immediate need. Many strategies, like using a timer for expectation setting, or creating a personalized social story for a child, also can be applied across various situations and circumstances.
"We invite the families who gave the presentation to stay on after the session is over to read the chat box — full of cheerleading and support from other parents — and it's so validating about how hard these things are," says Bateman. "To think that eight weeks ago, they didn't know each other, and here they are talking about the hardest things happening in their lives."
Over the long term, parents can choose to share their contact information with other families and continue to support one another. "The interactions after the program extends its impact," says Adelman. "In addition to a social network, people support one another in different ways, like those with older kids mentoring those with younger kids." This helps alleviate the challenges some families describe of maintaining friends or not seeing family because of a lack of understanding from others regarding their child's behaviors.
The learning is also multi-directional. "As part of our hub team, we have people from different disciplines, educators, behavior analysts, and parent advocates," says Schwartz. "It's so amazing to see people at different parts of their careers and in related fields sitting together and learning from each other and families. It's interesting to hear what a speech pathologist says versus an occupational therapist, versus a parent."
A Cost-Effective Solution with Impressive Results
Although Bateman suspected that applying the ECHO® model in this way would be effective, even she was stunned by the results of the first 16-week study more than a year ago. "The outcomes were statistically through the roof," she says. "In Washington state specifically, it's often difficult to access Applied Behavior Analysis (ABA) therapy, but we know it's effective. This project increased family agency and their ability to respond to behaviors, gave them a sense of confidence and competence and created a social network with others going through the same thing." Beyond Washington state, she's also involved with programs in Virginia and Wyoming and seeing similarly impressive results.
"The thing that I think is so important, is how much people enjoy it," says Schwartz. "For the 16-week program we had 81 percent attendance during the summer. That doesn't happen. One family even called in while camping."
The program recruits families in a number of ways through healthcare channels, schools and other community services. Currently, the program has state funding from the Developmental Disabilities Administration (DDA). Schwartz can also imagine many more avenues for funding that would allow it to expand, including insurance companies providing coverage for the program as they do for classes after a diabetes diagnosis.
Not only that, but the established methodology has the potential for a myriad of additional applications. School districts could use the approach with teachers, school psychologists, or mental health care providers to offer support to families or for professional development for teachers or administrators.
"Rather than someone in a school district, trying to support people by going to every single school, it's a way of getting people together, and learning as a community and they don't even have to leave their classroom or office," says Schwartz. She could also imagine programs supporting families of children with disabilities at various life stages, like puberty or when children gain more independence as an adult, or programs for schools that focus on particular issues like autism, literacy or developing friendships. “These could be offered annually by DDA or accessed by schools through some sort of a subscription model,” she says.
For the current application to support more families, all it needs is sustainable funding and step-by-step expansion. "One of the big rules of the ECHO® model is you don't charge participants," says Bateman. "It's a way to democratize
"Nothing like this existed for me," says Adelman. "We're bombarded when we have kids. We're told by professionals that every interaction matters. If you've reached out for help and it's twelve months away, that's too long. When parents feel like they are
Contact:
Charleen Wilcox, Director for Marketing & Communications, wilcoxc@uw.edu