Assistive Technology for Persons With ALS

What is ALS?

“Amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig's Disease," is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.” (Source: http://www.alsa.org) The motor neurons degenerate to the point that they eventually die. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, persons in the later stages of the disease may become totally paralyzed.

Early symptoms of ALS often include increasing muscle weakness, especially involving the arms and legs, speech, swallowing or breathing. When muscles no longer receive the messages from the motor neurons that they require to function, the muscles begin to atrophy (become smaller). Limbs begin to look "thinner" as muscle tissue atrophies.

At the onset of ALS the symptoms may be so slight that they are frequently overlooked. With regard to the appearance of symptoms and the progression of the illness, the course of the disease may include the following:

• muscle weakness in one or more of the following: hands, arms, legs or the muscles of speech, swallowing or breathing
• twitching (fasciculation) and cramping of muscles, especially those in the hands and feet
• impairment of the use of the arms and legs
• "thick speech" and difficulty in projecting the voice
• in more advanced stages, shortness of breath, difficulty in breathing and swallowing

Lou Gehrig, "The Pride of the Yankees", played seventeen years for the New York Yankees before being diagnosed with ALS.

One of the most well-known persons living with ALS is Professor Stephen Hawking;  In regards to the disability Stephen experiences, he has some things to say: "I am quite often asked: How do you feel about having ALS? The answer is, not a lot. I try to lead as normal a life as possible, and not think about my condition, or regret the things it prevents me from doing, which are not that many."

Assistive Technology to support persons with
ALS:

Tobii

The Tobii EyeMobile allows for completely hands-free access to Windows 8 Pro tablets. It gives individuals with physical and communication impairments the ability to navigate, control and access apps, Internet, music, e-books, social media, games and more through the simple, natural and relaxed movement of the eyes, allowing them to live richer, more connected and independent lives.

Because this is a hands-free device, it is suited for those who have lost motor control. However, it still allows people to communicate using eye gaze.

Stephen Hawking's AT:

"My main interface to the computer is through a program called EZ Keys, written by Words Plus Inc. This provides a software keyboard on the screen. A cursor automatically scans across this keyboard by row or by column. I can select a character by moving my cheek to stop the cursor. My cheek movement is detected by an infrared switch that is mounted on my spectacles. This switch is my only interface with the computer. EZ Keys includes a word prediction algorithm, so I usually only have to type the first couple of characters before I can select the whole word. When I have built up a sentence, I can send it to my speech synthesizer. I use a separate hardware synthesizer, made by Speech+. It is the best I have heard, although it gives me an  accent that has been described variously as Scandinavian, American or Scottish. "

Eyegaze Edge: 

The Eyegaze Edge is an eye-operated communication and control system that empowers people with disabilities to communicate and interact with the world. By looking at control keys or cells displayed on a screen, a user can generate speech either by typing a message or selecting pre-programmed phrases. Eyegaze Edge Systems are being used to write books, attend school and enhance the quality of life of people with disabilities all over the world.

With the Eyegaze Edge System a user can:

• Create, store, and use unique messages
• Send and receive emails
• Browse the web
• Listen to music
• Control a television and other IR-controlled devices
• Read a book in Kindle
• Watch videos on Youtube
• Access Facebook
• Control the Windows Desktop
• Operate a word processor
• Use a calculator
• Manage contacts
• Skype

Magic Trackpad for Mac: 
This device can be used by those that struggle to manipulate a mouse, but still have enough mobility and control to use a trackpad for their computer. Magic Trackpad is just like the trackpad on the MacBook Pro — but bigger. It’s made with the same advanced touch-friendly and wear-resistant glass surface. But with nearly 80 percent more area, it’s the largest Multi-Touch trackpad made by Apple. So there’s even more room for you to scroll, swipe, pinch, and rotate to your fingers’ content. And since the entire surface is a button that clicks, you can use it in place of a mouse.

Micro Light Switch

Activated by pressing down on the top of the switch with a light touch, this switch is suitable for users of all ages. It can be easily activated by those with limited upper body mobility.

AlphaCore Communication Board: 

These communication boards have the alphabet as well as core vocabulary words. The targets must be pointed at, so these boards are suitable for those with good movement and control. Communication boards are low tech devices, but they can be especially useful in the event of a malfunction with a higher tech device.

Laser Pointer: 

A laser pointer can allow a person without speech and with very limited physical movement to directly point to letters, words and phrases on a communication board. Laser pointers are simple and easy to use, but they can provide an EXTREMELY fast and efficient way to communicate. Even some people with extremely limited hand movement may be able to use a hand held laser.

Videos: 

Three individuals living with ALS

Augie Nieto

A pioneer in the fitness industry, Augie co-founded Lifecycles, Inc. in 1980. Over the course of 20 years, he grew the company, now called Life Fitness, Inc., to be the largest commercial manufacturer of fitness equipment in the world. Yet in March of 2005, Augie’s life took an unexpected turn; he was diagnosed with amyotrophic lateral sclerosis (ALS, Lou Gehrig’s disease). Drawing strength from his family, friends, and a flood of supportive emails, Augie maintains a positive attitude and continues to lead an active life in Corona Del Mar, California, with his wife, Lynne, and their four children. 

Video: http://www.youtube.com/watch?v=9lEKwYosQg4

Links to an webisode of a series profiling Tim who has ALS.

Steve Gleason has inspired a lot of people through his fight against amyotrophic lateral sclerosis (ALS), and that includes a professor and group of students at WSU who are developing predictive eye-tracking software that they one day hope to release as an open-source and, most importantly, free alternative to the costly options available today.
http://www.cougcenter.com/2014/2/27/5440016/wsu-steve-gleason-to-improve-communication

Article Response 6: Learning from Text

Dave Edyburn's article is a clarion call against the mantra of, "But we've always done it that way." In his critical reflection on what really matters for struggling readers, he asks a series of probing questions to address "... the mismatch between the skills that students with disabilities bring to the general education classroom and the expectations deeply rooted in learning from text instructional models (p. 16)."

His questions could be the focus of many staff meetings or site-based teams. They include:

• Can students demonstrate appropriate academic achievement when the instructional model expects reading fluency at grade level and their disability reflects skills at a much lower level?
• What should be done when a student fails to learn necessary information because he can't read the instructional materials?
• Is the core task learning to read or reading to learn? And, if I can't read, which task takes priority?
• How do we decide if the best course is remediation versus compensation?
• When should students be provided with compensatory technologies when they can't read?
• Are there other ways of performing reading tasks?
• How much failure data do we need before we have enough evidence that the child can't perform the task? When do we intervene? And, what do we do?

Edyburn goes on to argue that it is our responsibility to make texts accessible to learners. Following Dyck and Pemberton's model for adapting text, Edyburn proposes a modifed version that includes tech interventions:

His article concludes with a wealth of tools that can be used to implement the various strategies such as bypass reading, decrease reading, support reading, organize reading, and guide reading. I would guess that, since this article was written in 2003, he has updated his list with apps and accessibility features.

I found his article speaks to me. In our board's social justice framework, how do we ensure a socially just learning environment for all? More specifically,as a Grade 3 teacher, I understand how critical it is for students to have control of the reading process before they leave me and move on to Grade 4. I advocate continually for the struggling readers in my class to receive program support, early literacy support, and other additional supports that may be available. But Edyburn's questions give me pause. I need to consider when it may be more appropriate to advocate for the appropriate assistive technology to support student learning. I need to ask myself, "What really matters for this struggling reader? For, in the words of the Lorax:

Article Response 5: iPads as Instructional Tools to Enhance Learning Opportunities for Students with Developmental Disabilities

The article,  iPads as Instructional Tools to Enhance Learning Opportunities for Students with Developmental Disabilities presents action research findings that are very timely. Published this year, it is probably one of the most current examinations of the use of iPads for students with special needs.

The authors, Cummings, Strnadova, and Singh, begin with a literature review that examines 40 years of research in assistive technology. For decades, various types of technology have been used successfully with students with special needs. However, with the movement for UDL, the challenge has been how to ensure access is universal.  The hunch the researchers wanted to explore was that iPads can do both: provide assistive technology that can be universal in service delivery. "Technologies such as personal digital assistants and tablet computers, along with corresponding applications (apps) have the potential to overcome many of these challenges. (p. 153)"

The researchers had two questions:

1. How can mobile devices assist and enhance learning opportunities for students?
2. What are the perceptions of students with developmental disabilities and their teachers, with respect to using the iPad as an instructional tool?

With a set of iPads, the teachers in the study embarked upon action research, using a praxis model:

1. look at the learning needs of their students and and their own learning needs, and design tasks and experiences to improve their skills and knowledge and engage students in new learning experiences
2. evaluate the impact of these actions
3. make adjustments and re-implement.

iPads were used to provide content area material, increase academic engagement, as a communication tool, and to provide greater independence.

In their findings, teachers reported that iPads made it easier to differentiate, students had greater ability to access curriculum, student work improved, and students were more independent, less frustrated, and better able to communicate.They also reported feeling more confident and creative. Students reported finding it easier to concentrate and that learning was exciting and fun. Evidence of learning was captured digitally with photos and videos of students' learning. 

The challenges included finding apps with appropriate content, a lack of iPads for teachers, and the reluctance of other teachers to use the technology. Next steps include gathering more stringent qualitative and quantitative data, and finding websites that regularly review apps. They also acknowledged that keeping up with technology is a continuous process.

As I read this article, I found myself envying the teachers involved in this research. What many of us wouldn't give to pilot a set of iPads and have the support and professional development that accompanies such a venture! Over the next few years, I hope school boards look for innovative and creative ways to extend the use of assistive technology in our schools, so that Universal Design for Learning may be truly universal.

Article Response 4: Accommodating Diversity by Analyzing Practices of Teaching (ADAPT)

I loved this article. In fact, I have loved all the articles I have read. They need to be read, and reread, and shared, and discussed at staff meetings and in PLCs. They will help us continue to move forward.

Lee and Picanco, the authors of this article, use the acronym "ADAPT" to describe their method of improving student achievement: Accommodating Diversity by Analyzing Practices of Teaching. They acknowledge that some schools are slow to implement new instructional approaches, and that for students with special needs the implementation may lag even further behind. (see "Fire and Light" metaphor in Article 3 response!) The power in this article is that the practices they cite are validated by research.

Instructional practices are measured against the four phases of learning:

1. acquisition - initial and explicit exposure to content
2. proficiency or fluency - automaticity through repeated practice
3. maintenance - using the skill without supervision
4. generalization - applying the skills to other situations

Evidence of this, in current initiatives in our province, include the "gradual release of responsibility", balanced literacy (modelled, shared, guided and independent reading and writing), and levels of questioning in math.

The teacher, as careful observer, is continually assessing where each child is in his/her phase of learning, and groups are flexible and changing. This model is akin to the "adjustable seat" Todd Rose spoke of. "... all students are working on a similar concept or skill, but at their appropriate readiness levels within the phases of learning (p. 138)."

The authors go on to advocate for the use of UDL principles, and co-teaching to facilitate differentiation. The potential is there. "Differentiated instruction, UDL, and co-teaching can be used effectively in concert with planning for the phases of learning to create optimal learning experiences for students (p.143)." We only have to A.D.A.P.T.

Article Response 3: Differentiated Instruction: Begin with Teachers!

What does it mean to be a life-long learner?

That is an important question for educators to reflect upon. Kimberly Kappler Hewitt and Daniel K. Weckstein, in their article Differentiated Instruction: Begin with Teachers! describe the process one school undertook to support learning as a life-long process for all.

Differentiation, as defined by Carol Tomlinson, is "modifying content, process,and/or product according to student interest, readiness, and learning profile." Differentiation  was this school's academic goal, but this goal was met with resistance by some veteran educators. The school needed to develop a process worthy of the time, energy, and trust of the staff. By doing so, one staff member who was initially most resistant became one of the champions of differentiation.

Guided by the work of Tomlinson, they operated out of her "Fire and Light" metaphors:

that, at best, we want educators beckoned toward this change (light), but, failing that, must use fire to push them to change. In their follow-up book, Differentiation is an Expectation, Kappler Hewitt and Weckstein write:

Light symbolizes efforts to beckon and draw teachers toward change. Light represents warmth, companionship, comfort and security... Light strategies have the greatest impact... Not all teachers, however, respond to being beckoned by the

light. Fire strategies are therefore necessary to communicate that all teachers are expected to differentiate and that this expectation is nonnegotiable...Fire symbolizes the necessity of making it uncomfortable - or impossible - for teachers to maintain the status quo.

So the question remains: how did they bring their staff on board? Teachers were shown the benefits of differentiation by experiencing it themselves in their own supervision. Based on each teacher's self-assessment, supervision goals and action plans were developed, with choice for all. Administrators were advocating that a one-size-fits-all approach does not work for children; and they modelled that same reality for the teachers. They weren't just talking the talk, they were walking the walk.

In their analysis of why it worked, the authors attribute it to choice and modelling: 

• the empowerment of teachers through choice, and 
• modelling among the staff what they would in turn implement among the students.

I believe good teaching is good teaching, good leadership is good leadership, and best practices are best practices. When those are modelled with respect and wisdom, often even the most recalcitrant teacher will be moved to embrace change.

Class 9: Augmentative and Assistive Commmunication

Clarissa and I teamed up to work on this week's task: understanding COMMUNICATION, and, more specifically, AUGMENTATIVE AND ASSISTIVE COMMUNICATION (AAC). Like the reading and writing process, communication is a complex process as well. It is at the heart of all we do.

Below, you will see some of our findings, taken from our whiteboard. 

There is a multitude of ways to communicate:

The three criteria for effective communication are:

1. join attention
2. communication partner
3. common language/message

Examples of AAC

• Software, such as Boardmaker and Write: OutLoud
  

• Devices, such as Tobii and Dynavox, for speech generation

• Switches
  

• iPad apps, such as Proloquo to Go and MyTalk
  
  
  
   

• Low-tech communication

Video of AAC

There is a delightful video, entitled "Lianna Bryant Speaks." This spirited 9-year-old has much to communicate,  using her Tobii, as you will see in this video:

https://www.youtube.com/watch?v=cAvcquMd0vY

Class 8: The Writing Process

If you thought the reading process was complex, take a look at this image of the elements of the writing task, developed by our professor, Barbara Welsford:

I realized I take so much for granted when it comes to writing! We watched two videos: Low Tech AT for Writing and Pencil Grip, Positioning and Handwriting, which provided further perspectives on how we can support writing. Programs like Inspiration/Kidspiration, and apps like Clicker Connect were also demonstrated.

Following this class, I was particularly interested in observing all these elements at play during Writer's Workshop in my classroom. My students love to write, and engage in the task enthusiastically. On Friday afternoon, following a very exciting Open House for their families (which ended with having lunch together), students had an opportunity to write in their Journals. With their Writer's Notebooks, Word Study folders, and Journals, they spread themselves out around the room to write. Preparation for the task included sharpening pencils, finding a comfortable place to write, accessing technology for speech recognition. rereading ideas from their Writer's Notebooks, and having conversations with a partner about their topic.These were some of the processes I could observe. As I moved through the room I marvelled at what they were able to do... at what they had under control in order to do what they did...  and so much was invisible to me: it was happening inside their heads. What I love most is that the children see themselves as writers, and take pride in what they write. I hope that passion stays with them!