Our work on cognitively accessible self-management applications has always relied on a participatory research approach that grounds development in the real-world life experience of individuals with disabilities and those who support them. We are fortunate to have a rich network of students and adults with disabilities, parents, and teachers who drive our iterative development approach by providing design input, using our beta version apps, and telling us how to improve them.
Through that process we were introduced to Laura Dahill, her 11 year-old son Ethan, who experiences autism, and his twin brother Jackson. Laura is a parent advocate with The Arc Families Connected and works with parents throughout Lane County. At the suggestion of a local autism consultant, we met to discuss the Cognitopia Suite of web-based life management applications and how they might be helpful to Ethan as he transitioned from elementary grades to middle school.
Prior to starting the current school year, Laura began using the Goal Guide application to build an activity and reminder system that Ethan could use to manage his own schedule routines at home and at school. In the first installment of this two-part blog series, Laura talks about Ethan’s use of Goal Guide. In the second installment, she’ll discuss Ethan’s use of the MyLife application for IEP self-direction—how they are using MyLive to give Ethan a better grasp of his IEP goals while providing an ongoing self-assessment mechanism that will enable him to take a more active role in running his own IEP meeting someday.
What are some of Ethan’s obstacles/challenges to maintaining a schedule and a routine at home and at school?
At school, Ethan receives support from instructional assistants (IAs). In elementary school, an IA helped Ethan transition from class to the lunchroom and recess, as well as other classes, like PE, music and library time.
In middle school, I knew we needed to up the ante as Ethan would be transitioning to multiple classes with multiple teachers. Hearing about Cognitopia at Ethan’s person-centered planning meeting, it dawned on me that the Cognitopia suite of web-based apps could possibly help Ethan learn his new middle school schedule and maneuver throughout his day, without relying so much on adult support to help him get from point A to point B.
At home, the morning routine is always a struggle. While I know it doesn’t seem like it should be so tough, trying to get twin boys fed, dressed and out the door in a timely manner is a Herculean effort. One verbal request for action turns into five repeated requests, which eventually escalates to me ranting, racing against the clock, and struggling to get my children (who have yet to learn the fine art of timeliness) out the door and to school on time.
As a parent of a child who experiences autism, I have seen numerous instances where people who experience a disability respond better to a technology interface rather than a human interface. It’s like it’s easier for them to communicate with a piece of technology because the pressure of having to make eye contact or read body language doesn’t exist with a piece of technology. To put it simply, I think Ethan far prefers to receive a reminder from Goal Guide when it’s time to put on his shoes and get in the car rather than hear it from his nagging mother.
How did you collaborate with the school to implement the use of Goal Guide throughout the school day?
In the spring of Ethan’s 5th grade year, we had his annual IEP meeting. We had documented our parent concerns about the transition to middle school and proposed ideas to help make this transition a smooth one for Ethan. One of the ideas was for the school to allow us to have Ethan’s school issued iPad (he already had use of an iPad as an accommodation for writing written into his IEP) during the summer so we could work with Cognitopia to test Goal Guide. We also had to work with Ethan’s receiving middle school team to get his class schedule for the first trimester as well as class times. I also worked with individual teachers to find out what Ethan needed to do as he entered their class to get ready for that day’s lesson.
I learned Goal Guide is great because it can be so individualized. For example, what Ethan has to do in band class is far different from what he needs to do when he enters science class. Setting up tasks with timed reminders enables Ethan to use an iPad for support rather than looking to an adult for support. Ethan using an iPad is far less attention grabbing than him looking to an adult support person. He is simply a typical middle school student accessing technology.
How do you monitor Ethan remotely and how often do you check in with Goal Guide during the school day?
Goal Guide can be set up to send updates to parents or members of the team, so progress can be monitored. We have found we don’t need to monitor as much anymore because Goal Guide has become a regular part of Ethan’s routine.
We do touch base with Ethan’s team to update Goal Guide each trimester with his new schedule and ensure the tool continues to help Ethan navigate his schedule and his day with more independence. Support from the school team is important to help make sure the goals and tasks are aligned with the student’s school routine.
What potential do you see for Goal Guide for individuals who experience disabilities or other parents and caregivers in supporting roles?
I see vast potential for Goal Guide. I think it could be used to help kids with chores and future employment success. I think it could also be used in schools to help kids manage behavior and earn positive reinforcement. One thing about working so closely with the Cognitopia team is that they are very responsive to feedback. For instance, I thought we could really use a focused communication component added so teachers and parents could communicate regularly to better collaborate across home and school environments. Ethan’s teacher was on board with that as well, so now Goal Guide has a “team chat” feature that does just that. Our hope is that when Goal Guide is available to the public, others will find it to be as useful as we have and it’s cool to know that we’ve been part of making it happen.
Laura recently submitted an opinion piece on supporting people with disabilities to the Register Guard newspaper in Eugene, Oregon. She is also a director of The Arc Families Connected; one of seven family networks in Oregon designed to help families who are raising a child with a disability.