Self-advocacy and AT: Early Opportunities for Independence
Gayl Bowser reflects on how she came to know the importance of student self-advocacy
When Eliza Anderson, AT Program News editor, asked me to write about my perspectives on self-advocacy, I started by asking myself, “When did I first start thinking about self-advocacy? What impact did it have on my approach to education?” I realized my interest in self-advocacy began when I started my first teaching job in an isolated rural setting. I want to tell you about that first teaching experience because it led me to important lessons about my students’ self-advocacy and it helped shape my work for years to come.
I was a resource room teacher in a small rural community in the south. When I took the position I received guidance with setting up the program and was assigned students the first day of school. I knew that getting to know my students would be an important first step for our classes and many of the activities and lessons during the first weeks were aimed at helping them feel comfortable talking with me about their lives, their disabilities and their hopes and dreams. For this reason I felt I was on the right track when, right away, nine-year-old Alvin piped up as we got out our reading books. “Ms. Bowser, how come we have to learn to read?”
I explained to Alvin that you have to read to grow up, get a job, find out what is happening in the world, and to be a good citizen. Alvin’s response was direct and to the point. “Do not! My daddy can’t read and he is a house painter. My momma can’t read and she knows everything that happens in this county. My grandpa can’t read and he’s on the town council!”
Eventually I did come up with some reasons to read that were good enough for Alvin and, in fact, he would learn to read. But first he taught me an important lesson about self-agency and self-advocacy. Alvin never took on a learning assignment without first agreeing to it, and he wouldn’t agree to it if he didn’t know what it would mean to him. Indeed, Alvin seemed to have had an innate sense of who he was, where he wanted to go and what he needed to get there.
Through the years, however, I saw that many of my students weren’t so naturally self-directed. They waited for adults to choose for them. They assumed adults would help and we did. Often, adults who worked with students with disabilities wouldn’t even ask if they wanted help and so sometimes they got too much. Then, as a teacher, and as an inclusion consultant and, eventually, as the State of Oregon’s Specialist in Assistive Technology, I noticed that some of the kids I worked with finished school using assistive technology and kept using that technology to become successful independent adults. Others—with very similar disabilities and similar AT—struggled to maintain even a basic level of self-direction. I often wondered what made the difference.
In the mid-1990s I got the chance to find out. The Oregon Technology Access Program (OTAP) was invited to partner with Oregon Health Sciences University for a grant-funded project sponsored by the Federal Office of Special Education Programs. Project Tech Trans investigated why some people who had used AT successfully in high school kept using their AT as adults; while others put the devices they used in school in a closet or attic and never got them out again. What we learned in that project affected the AT work I have done ever since. It also took me back to my classroom days with Alvin and other students I have known.
Project Tech Trans (Fried-Oken et al., 1998) showed that the essential ingredient was—yes—self-advocacy skills. Adults who continued to use their AT after high school demonstrated skills such as:
Just being able to choose or problem solve wasn’t enough. Self-advocacy involves independent action, the ability to do what you can on your own and to ask for help when you can’t. Alvin was a natural self-advocate at the age of nine. Other individuals need instruction. But self-advocacy skills can be learned.
- Choice making: “I choose whom to invite to my planning meetings.”
- Decision making: “I know how to make an informed decision.”
- Problem solving: “I have completed a portfolio that contains important names, numbers, and email addresses.”
- Goal setting: “I know how to share my goals with others.”
- Evaluation: “I can describe my strengths and needs.”
The first time you meet Emma, for example, you might think she can’t self advocate. Emma needs personal care for eating, hygiene and positioning. She uses a power wheelchair, augmentative communication and a single-switch scanning device to operate her computer. All of her devices must go with her everywhere for her to be independent in her school work, her communication and her vocational program. But the folks at home don’t use those tools, and so sometimes they forget to send a device or one of its parts to school with her in the morning. When she doesn’t have all her equipment, Emma can’t do her work. And she wants to work!
Project Tech Trans found that there are self-advocacy skills that are directly related to the use of AT. Successful adults who use AT are good at tasks like these:
Fortunately, Emma’s teachers have taught her general self-advocacy skills and these have led to some impressive AT problem solving. On her own, Emma now makes sure she has her devices so she can be independent at school (AT Goal Setting). She has learned to keep track of what goes in her backpack in the morning as she gets ready for school, and she knows if her AAC device is connected to her wheelchair before she leaves the house (AT Self-evaluation). Emma knows that if any of the six parts of her system are missing she needs to do something. If there is a missing part, she points to the place it is kept and vocalizes. If nobody notices, she makes louder sounds and bigger hand motions until someone pays attention and gets her AT. Emma has learned to “holler” until she has the things she needs to take to school. Project Tech Trans found that the more the individual is able to advocate for their own AT use, the more likely it is that AT will be considered a valued and empowering tool for goal achievement. Likely, Emma’s devices will accompany her long after high school.
- AT choice making: “I know about the specific AT that I need and I choose the system that works best in my life.”
- AT decision making: “I know when to use AT and when to use another accommodation.”
- AT problem solving: “I know how to get help when my AT is not working properly.”
- AT goal setting: “I view assistive technology as a tool, not a solution to accomplishing my goals.”
- AT self-evaluation. “I can describe my strengths and barriers related to using AT.”
It is critical to help individuals learn to be self-advocates for their AT use as early as possible. I think we should start helping kids figure out how they do that on the same day we give them their first AT device. If they learn AT self-management and independence at the same time as they learn the operation and functional use of the technology, AT becomes an integrated part of everyday life and routines. The earlier AT self-advocacy is addressed, the more likely it is that AT will make a difference for the independent adults we hope they will become.
Gayl Bowser's work as an independent consultant focuses on the integration of technology into the educational programs and lives of people with disabilities. (firstname.lastname@example.org)
BlueAssist: Tools for Self-Advocacy and Inclusive Communities
Here's a community-building initiative that's gaining ground around the globe!
Blue Assist is a global effort to support self-advocacy and create caring communities that are more responsive to individuals with cognitive and communication challenges. It takes the "safe routes to school" concept and combines it with the universality of the wheelchair icon to promote a new symbol for asking for help. Partnered with awareness and outreach efforts, the BlueAssist symbol helps individuals with intellectual, cognitive, and communication challenges to ask assistance from passers-by. In this way, BlueAssist may soon improve how community members look out for one another, and research suggests it may provide significant cost savings in the process.
The BlueAssist concept was first launched as a graduate student's project in Belgium in 2007. It started as a symbol for use with low-tech communication aids--cards with different help messages--to assist users when out and about in their communities. BlueAssist is now a Belgium-based non profit, and its approach has expanded to include mobile apps with features useful for staying on task, safe, and connected to caregivers. An app version was tested with day programs and other institutions in Belgium and the Netherlands in 2010 and 2011, and was refined and tested on a larger scale with the support of the Belgian government in 2012 and 2013. Today, individuals with disabilities are trained with these low and high-tech BlueAssist tools to engage community members for assistance. In BlueAssist parlance, they are empowered by their expanding "interdependence."
The Movement Grows
In the Netherlands and Belgium, the BlueAssist symbol is becoming integrated within public transportation and government services as well as other designated BlueAssist-friendly spaces (such as partnering businesses). Indeed, Belgium has officially recognized BlueAssist as a social innovation; as of 2013 the city of Ostend is encouraging the whole community to embrace BlueAssist, and Genk and Kortrijk will soon follow. Recently the BlueAssist app, and its companion apps (collectively referred to as "Cloudina"), were made available for use by anyone (not just institutions) in Google Play and iTunes. In this way, BlueAssist is a top-down and bottom-up social movement driven, in part, by assistive technology.
According to Sandy Hanebrink, Executive Director of Touch the Future Inc. (U.S. distributor of Cloudina), the BlueAssist app currently has over 2,000 users worldwide. Beyond Belgium and the Netherlands, BlueAssist is in Canada, the U.K., Spain, Germany, Israel, and Qatar. In the U.S., BlueAssist has initiatives in Georgia, North Carolina and South Carolina, New York, North Dakota and South Dakota and soon in Missouri, Florida, New Jersey, California, and Oregon. Shortly, she reports, BlueAssist is also coming to Portland, Maine. The University of New England is piloting Portland as a BlueAssist community to create BlueAssist-friendly spaces, and plans are underway to pilot the Cloudina apps with adults in a Portland day program.
In the U.S., BlueAssist interest may also soon grow due to Senator Schumer's proposal for Avonte's Law. The law honors the memory of the 14-year-old boy from Queens, New York who went missing from school grounds last October (and was later found dead). Avonte Oquendo, like many children with autism, was prone to wander. If passed, Avonte's Law would finance optional electronic tracking devices to be worn by children with autism. "The tragedy has highlighted the need for both safer communities and a way for some parents to find their children before they get too far," Hanebrink notes. "Blue Assist can provide both."
Indeed, the Android version of the Cloudina Phone app (a companion app to BlueAssist) includes an optional, secure, GPS tracking feature. The option allows authorized contacts to find an app's user by sending them a text. It also enables a user to send his or her location (to authorized contacts only) with just the tap of a finger.
The feature can work in concert with the BlueAssist app. BlueAssist displays the Help icon with messages customized to a user's anticipated needs (i.e. "Can you call my coach and tell them I need help?"). And it integrates a call button programmed to a support person's phone number. The messages are displayed for sharing with community members, but the app can also read messages aloud using synthesized speech. Combined with the Phone app's GPS tracking capability, these are powerful tools for safety and autonomy. For users who can benefit, the BlueAssist app may be programmed for dialing 911, and the Phone app can authorize 911 to find the user's GPS location. Hanebrink says some users create a BlueAssist message for 911 that gives them peace of mind. And thanks to the app's synthetic read aloud feature, users can deliver the message directly and autonomously over the phone (i.e. "This is a 911 call from John Doe, a BlueAssist user, who is unable to communicate. Please send a text to (555) 555-5555 to get John's GPS location and send emergency services. John's emergency contact is Jane and can be reached at (555) 555-5556").
The Cloudina apps are most commonly used with adults with intellectual challenges, such as Down syndrome and autism, but Hanebrink feels the potential reach is broader. The technology is appealing to job coaches, residential programs, adult day programs, and schools because it increases independence through community as well as remote caregiver support. "With the apps, users have learned to independently navigate public transportation. They are less reliant on special transportation services or on their coaches, which is a huge cost savings." Programs in Europe, she says, are reducing their waiting lists and serving more clients. "This movement benefits everyone. It's why it's taking off. We're creating safer more inclusive communities for individuals with disabilities, for students, for seniors. People are gaining independence and a better quality of life. Programs that support individuals are saving transportation dollars. It's win-win all around."
About the apps (Android and iOS)
Cloudina BlueAssist is the full version of the BlueAssist app. It includes:
The app is available for a 30 day free trial and charges $12/month thereafter unless bundled with additional Cloudina apps ($16/month for the complete package).
- The ability to create multiple help messages, each labeled by an identifying image or symbol (should the user not read).
- Synthetic voice options for reading messages aloud (speech generation).
- An integrated call button programmed to dial a designated support person.
- An interface with only two levels for ease of use.
- Adjustable font size.
Cloudina Phone is a simple to use phone book app with unique features for users with cognitive challenges.
The app is available for a 30 day free trial and charges $12/month thereafter unless bundled with additional Cloudina apps ($16/month for the complete package).
- Name or picture-labeled contacts, one per page, with call button.
- Swipe pages to browse contacts or view grid of contact options (if 8 or less).
- Secure GPS tracking. Allows the user to send their GPS location to a specific contact if lost. Designated contacts may also locate a user by sending a text message even if the user does not initiate communication. An Android-only feature.
- Each contact's hours of availability may be programmed into the app (preventing calls at midnight, for example).
- Adjustable font size.
- One level interface for ease of use.
Also explore the Cloudina Photo Album and Cloudina Calendar apps! These may be used for creating schedules, programming reminders, and accomplishing tasks.
- Displays the Blue Assist icon with one fixed "help" message (available in several languages).
- The ability to create and customize one additional message.
- An integrated "call" button that is programmed so a community member can dial a designated support person for assistance.
- There are three symbols to choose from for use with the custom message to help the user identify the subject of their message if they do not read (a question symbol, a shopping cart symbol, and a bus symbol).
How 'Ya Gonna Keep 'Em Down on the Farm ...
Insights from the life and career of Utah Self-Advocate Gordon Richins
Gordon Richins bristles when he hears people use the phrase, "confined to a wheelchair."
"I'm not confined,” he says. “It gives me liberation. I get in and go."
His power chair, he points out, is just another form of transportation, and one he's relied on since recovering from an unplanned confrontation with a hay bale in 1987. Rather than confined, Gordon has taken his chair far--from life as a "grumpy dairy farmer" ("which had to do with the 3:30 a.m. alarm clock," he says) to life with considerably wider horizons as a national disability advocate.
Indeed, since the accident, there have been fewer cows, more and different people, and experiences that have combined to recover his spirit.
“I became a nicer person,” he says. “You can ask my wife.”
His transformation started in college. Following rehab and two years at home, Gordon attended Utah State University (USU) through Idaho Vocational Rehabilitation. It was the early (and pre-Internet) 1990s, and there he earned a BS in Agricultural Business. That experience introduced him to living as a more social person, attending classes and learning from others as well as how to "peck around on a 286 with 40 MB RAM using a mouth stick (there was no mouse back then)."
With his college degree and new penchant for spending time with people, Gordon made an excellent candidate for an AmeriCorps VISTA position at OPTIONS for Independence, northern Utah's Center for Independent Living. The USU Disability Resource Center urged him to apply. There he worked for two years as a VISTA and discovered the world of disability advocacy as well as a broader sense of identity within the movement. "It was a great experience," he reflects. "After OPTIONS, I really felt like a member of the disability community."
When the VISTA position concluded, however, Gordon spent six months unemployed. Then he spied a job listing for a Consumer Liaison at the USU Center for Persons with Disabilities (CPD). "I can do that," he thought. The rest is CPD history.
Gordon has now worked as the CPD’s Consumer Liaison for nearly two decades, helping to educate the community about resources and opportunities for persons with disabilities and reaching out to and connecting with individuals who can benefit. He assists the CPD's Consumer Advisory Council, which is made up of five self-advocates, five parent/family advocates and five agency advocates from across the state.
The CPD is part of the nationwide network of University Centers for Excellence in Developmental Disabilities (UCEDD). Representing the CPD, Gordon also serves as a national advocate on the Council on Community Advocacy (COCA), a part of the UCEDD network. There he spent six years as a COCA Person with a Disability Co-Chair, and as a board member for the Association of University Centers on Disability (AUCD). Gordon's advocacy work on a national level has additionally extended to participation with NCIL (the National Council on Independent Living) and APRIL (the Association of Programs for Rural Independent Living).
Not surprisingly, Gordon’s responsibilities with so many organizations have landed him a frequent flyer. In addition to traveling regularly in and out of state for meetings and conferences, Gordon and his chair have traveled as far as Puerto Rico and American Samoa. "I'm fortunate," he reflects. "Not everyone gets these opportunities. Indeed, I know many who don't."
Traveling this extensively, Gordon has collected a few war stories … like the time Delta Airlines damaged his power chair's electronics and rendered it a 350 lbs. manual push. In the past, such a breakdown would have seriously impeded his productivity. Now, he says, with help from the UATP reuse program he has a backup power chair for such events. He can also go years without a problem thanks to the preventive maintenance provided by the UATP Assistive Technology Lab. (The Utah Assistive Technology Program is a program of the USU CPD.)
Libby Higham works on Gordon Richins' power wheelchair at the CPD's Assistive Technology Lab.
Looking back, Gordon marvels at how far assistive technology has come since his accident in 1987. No longer reliant on a mouth stick for typing, he uses the voice recognition software, Dragon NaturallySpeaking.
"I wish I'd had THAT in college!" he says.
He commutes to work in a van that he can roll directly into without a lift and that receives and locks his wheels securely. At home he has power door openers and control of the lights, air conditioner, and various consumer electronics via remote control.
Over the years, Gordon and the CPD have learned a lot from each other. Lessons include how to retrofit the university's fire-magnet system (that closes all doors in the event of an emergency) to insure Gordon can still exit his office. He spearheaded a workgroup that deployed three additional technologies and a back-up generator. He has also learned how to be an effective advocate for individuals with developmental disabilities, and learn from those experiences that are outside of his own.
Indeed, working as a self-advocate--addressing problems and barriers one experiences first-hand--is clearly made more satisfying when it also informs advocacy work of benefit to others, and when it can intersect with communities from which you have a chance to learn. "It's a two-way street," he emphasizes. Gordon roots his satisfaction with this aspect of his work in a story from childhood: "There was a boy I used to play with who lived next door. He was my age but come time for starting school, he wasn't there. My mother told me they don't let boys like him go to school. It felt wrong, and it was wrong."
Today Gordon still lives on his family farm, and he loves rural life. "I just prefer my cows for dinner."
Don't Limit Me!
a powerful video message from Megan Bomgaars