Wednesday, April 25, 2012

Assistive Technology Addressed at 15th Biennial ISAAC Conference

April 25th, 2012

The 15th biennial ISAAC Conference is being held in Pittsburgh, Pennsylvania, from Saturday, July 28 through Saturday, August 4, 2012, and, in addition to alternative and augmentative communication (AAC) topics, it will feature a wide variety of workshops and sessions addressing what’s new in assistive technology from development to usage.
A pre-conference highlight is the Apple workshop addressing new and innovative solutions for individuals withDavid L Lawrence Center - Day disabilities that provide access to the Mac, iPad, iPhone, iPod and Apple TV. Apple presenters will discuss the many ways the company and its developers have implemented accessibility features into its hardware and software. In addition, the workshop will explore a range of apps that were designed specifically for AAC, and attendees will hear about real-world solutions for iPads in the special needs classroom.

“At ISAAC 2012, we wanted to put the focus on AAC intervention from iPads to Brain Computer Interfaces (BCIs),” says Dr. Katya Hill, Associate Professor at the University of Pittsburgh and Executive Director of the AAC Institute, “We believe that the Apple workshop will be a pre-conference highlight that introduces attendees to the integration of research, clinical, educational and personal evidence so important for improving quality of life for individuals across the lifespan. Technology plays such an important role in AAC, and we’ve added many great sessions and a large exhibition to shine a light on this important area.”

Monday features the worldwide perceptive on the state of AAC science, clinical practice and user/family issues while Tuesday highlights AAC intervention for Autism Spectrum Disorder (ASD) and literacy. On Wednesday, August 1, the conference will feature sessions on idevices and apps starting with an App Developers Forum where AAC Stakeholders and app developers will come together to discuss issues related to research and development of communication, language and educational apps to devices and tablets. Finally, Thursday offers sessions on adults with acquired disorders, e.g. ALS, strokes, PPA, etc., who use AAC with a special BCI State of the Science plenary.

A variety of concurrent sessions will also be offered by outstanding presenters including Linda Burkhart, Janet Sturm, Karen Kangas, Karen Erickson and Carolyn Musselwhite. Gregg Vanderheiden, PhD, will conduct a plenary on the current and future technology developers where he will discuss a new paradigm for assistive technology.
ISAAC 2012 will also feature a cadre of firsts that include:
  • an AAC camp that will celebrate The Artist Within for up to 25 children who use AAC from around the world. AAC camp will kick-off all that ISAAC 2012 has to offer.
  • specially designed pre-conference instructional courses that involve notable presenters: Sarah Blackstone, Richard Hurtig, John Costello and many others.
  • a full conference program for people who use AAC and families with a Technology Service Center to help trouble shoot minor problems experienced by AAC users.
  • Learning Labs as part of the exhibit hall for small, private product demonstrations and training by vendors/exhibitors.
  • an AAC Research Symposium on August 3-4 at the University of Pittsburgh being organized by Dr. Lyle Lloyd and others.
To learn more about ISAAC 2012 and to register, make hotel arrangements and learn more about Pittsburgh, please visit the conference web site at Keep abreast of ongoing conference developments on Facebook, Opt-in to receiving the AAC Institute e-newsletters featuring announcement updates on ISAAC 2012 up to the conference at Pittsburgh and Western Pennsylvania offer many tourist attractions to enhance attending ISAAC 2012.

Mobility RERC State of the Science Conference: Wheeled Mobility in Everyday Life

Save the Date: State of the Science Conference, July 1-2, 2012

Save the Date

Sunday and Monday, July 1-2, 2012 Marriott Waterfront Hotel Baltimore, MD

The Rehabilitation Engineering Research Center on Wheeled Mobility (mRERC) will conduct its State of the Science Conference (SOSC) in conjunction with the 2012 RESNA Annual Conference ( The SOSC will bring together experts in the fields of research, rehabilitation engineering, service delivery and policy to explore important topics related to the mRERC theme: Mobility in Everyday Life.

As part of the event, the mRERC is sponsoring the Sunday morning RESNA plenary session titled: How science influences public policy in seating and mobility. The plenary will consist of a presentation and discussion on how science influences public policy in seating and mobility and will address barriers that need to be overcome to allow policy makers to access and utilize research results.

This year’s Plenary Session: How science influences public policy in seating and mobility.
Rita S. Hostak
Vice President, Government Relations
Sunrise Medical

Doran Edwards, MD
Advanced Healthcare Consulting, LLC.
Speakers will address important topics such as:
  • How to tailor messages to policy-makers, just as one tailors messages to other stakeholders in the research and clinical community
  • How studies promoting evidence based medicine differ from those that target comparative effectiveness
  • What the functional outcomes are that interest policy makers with respect to comparative effectiveness research
  • How science and research can be used to allow companies to innovate more freely under current reimbursement policies

In addition to the plenary session, these sessions will take place Sunday, July 1st and Monday, July 2nd.
  1. Delivering wheeled mobility and seating services
    Laura Cohen, PhD, Rehabilitation Technology Consultants
    Nancy Greer, PhD, Minneapolis VA Health Care System

  2. Individualizing pressure ulcer risk and prevention strategies
    David Brienza, PhD, University of Pittsburgh
    Sharon Sonenblum, PhD, Georgia Tech

  3. Mobility trajectories and transitions: from walking to wheeling and vice versa.
    Louise Demers, PhD, OT(C), Université de Montréal
    Fran Harris, PhD, Georgia Tech
    Helen Hoenig, MD, MPH, Duke VAMC
    Lisa Iezzoni, MD, Harvard Medical School
    Jim Lenker, PhD, University at Buffalo

If you would like more information on this conference, please contact Stephen Sprigle at

30th Annual Closing the Gap Conference

Hailed as the most practical and best educational AT conference in North America, Closing The Gap is excited to share with you the 21 just-announced preconference workshops for October 15-16, 2012!

This year's workshop offerings include a two-day PODD workshop by Linda Burkhart, an autism workshop by Pat Mirenda, a Cortical Visual Impairment workshop by Christine Roman Lantzy, a Rett Syndrome workshop, UDL workshops and numerous iPad workshops, to name a few.

In addition, the conference itself (October 17-19) will boast over 200 presentation hours (to be announced in July), labs (including an iPad lab!) and an expansive exhibit hall.

There are many registration options and discounts available:

• $30 RETURN discount (by June 30th)
• BUNDLED WORKSHOP pricing (a $60 savings!)

CEUs and academic credit are available as well.

We encourage you to learn more about the conference by visiting our Web site now:

• View the 21 preconference workshop descriptions and titles.
• View the 2012 Closing The Gap Conference FAQ.

SHARE your knowledge and your skills . . .

We would further like to invite you to consider submitting a one- or multiple-hour presentation proposal for the conference, Wednesday - Friday, October 17-19. Click here for more information. Submission deadline is Thursday, May 3, 2012, 2:00 pm Central Daylight Time.

The learning opportunities are great, the networking nothing less than exceptional!

Jan Latzke
Conference Registration Manager

Toileting Ideas

Good ideas from a colleague of mine, Antoinette Verdone...visit her blog at

Toilet Access Basics
I visit people with disabilities every week, and whether I am there to look at their home for accessibility, or some high tech need, we inevitably end up talking about using the toilet. I thought I would take this opportunity to discuss some basic toilet assess issues and solutions.

Getting on/off the Toilet
For many people, getting on/off the toilet is difficult. Sometimes the issue is the height of the seat. To address this issue there are a number of solutions that could be helpful.

I see a lot of people choose a toilet seat extender with arms built in, like this:
Picture of toilet seat extender with arms buit in with large red X over the picture
Toilet Seat Extender with Arms Built In

I strongly discourage this option because it can be a safety hazard. The only point that the seat is secured to the toilet is the clip at the front. If a user does not put even pressure on the handles, it can cause a fall.

Here are some better alternatives:
Picture of toilet seat extender - no arms.
Simple Toilet Seat Extender

This item simply makes the seating surface for the toilet higher. It is easy to install, but can be difficult to keep clean.

3-in-1 used as toilet seat extender
3-in-1 Commode Over Toilet

Most insurance policies will provide a 3-in-1 commode. This product, in addition to being used as a bedside commode, can be placed over the toilet. The height of the legs is adjustable and the armrests give additional support. This is a great solution for many people.

Another way to raise the toilet seat if from the bottom with a Toilevator.

picture of toilet raised up by a toilevator between the floor and the toilet itself

This product will raise the toilet 3.5". Since the toilevator is installed between the toilet and the floor, you sit on the regular toilet seat, and do not have some of the cleaning issues with other alternatives.

If you need arm rests to help you get on/off the toilet, here are some products for that:
Toilet seat extender with handles that attaches between the toilet and the toilet seat
Toilet Seat Handles

This option is only slightly safer than the toilet seat extender with arms built in. It would be a little more difficult to fall with this set up, but keeping the toilet clean can still be problematic.

For some, just having handles to help get on/off the toilet is all that is needed. In that case, here are some solutions:

Picture of toilet seat safety frame installed on toilet
Toilet Seat Safety Frame

This is an inexpensive way to add armrests to your toilet. For some just having something to push off of is all they need to get on/off the toilet. And, since the arms are supported by the floor, it is a sturdy solution.

Picture of Super Pole installed in bathroom
Super Pole

The Super Pole (pictured above with Super Bar addition) is a great solution for many access problems, including toilet access. For some, having something to grab onto and pull up is a better assist for getting on/off the toilet. This product is held in place by tension between the floor and the ceiling. It is very sturdy, and as you can see from the picture above can be placed to help with toilet and tub transfers in some bathrooms. Also, because it is not structurally attached to the house, it can be placed in the exact spot that is helpful to the user.

This has been a look at a small sample of the products that are available for toilet access. I did an article on Tub Access a number of months ago, to read that article, click here. I also did a previous article on the "No-Touch Bathroom" click here to go that article.

For help with your toilet access or any other assistive technology needs, please click here to contact me.

Share Your Ideas
I would love to hear your ideas on this topic, please go to my blog - to leave your comments and/or suggestions about this topic.

I Know How He Does It: Parenting From A Wheelchair

"Honey, I just took a pregnancy test and it came out positive."

My husband's response to this news was typical of his reaction to most things. He was calm, collected, thoughtful. He smiled at me, took a deep breath and said, "OK." We both stared at the pregnancy test stick, put it under a brighter light just to be sure, and then... honestly, I don't remember. The surprise was so great that it still blurs my memory to this day. Sure, it's always a bit of a shock when that second line or plus sign appears, but we weren't just your average couple trying to have a baby. In fact, many people (including some doctors) thought it might never happen.

I've already used a few adjectives to describe my husband, but one I haven't mentioned yet is disabled. A spinal cord injury in his early 20s left him paralyzed from the mid-chest down. By the time we met, he was already past the ten year mark in his wheelchair. The idea of being in a relationship, let alone fathering a child, was, at that time, more of a distant wish than anything. But yes, sometimes wishes do come true, and there we were staring at a positive pregnancy stick to prove it.

And then our healthy, beautiful son was born. What's the expression? Careful what you wish for? The early days of parenthood were rough for all the typical reasons: lack of sleep, lots of crying (baby's and mine), figuring out a schedule -- all the usual suspects. But the truth is, we weren't your typical family and there were challenges my husband faced that most new parents do not.
Due to the level of his injury, the ability to perform two-handed tasks is limited. With virtually no use of the muscles in his mid-section, maintaining trunk balance can be very challenging when both hands are occupied. He often needs to have one hand grounded to help keep him upright. Ever try diapering, feeding, holding, soothing a newborn with one hand? Let me know how you do. Add to that the fact that we were first-time parents (read: nervous wrecks) and the end result was lots of mommy-baby bonding time with dad left on the sidelines providing mommy support when needed.
Being on the sidelines was difficult for my husband at first, especially as he watched his own father dive right in and help. We're fortunate to have all the grandparents live nearby and they were a big part of those early years. Both grandfathers were our primary babysitters and there was no task they would not or could not do. My husband made the conscious decision to be grateful for the help and reassured himself that his time for father-son bonding would come.

It happened slowly, but it did happen. Our newborn became a toddler who would ride on his dad's lap. A bit older and still on his lap, they would zoom down the hills together in Riverside Park. When swords became an obsession, the two of them would battle it out while I operated the video camera, happy to take my turn on the sidelines.

He grew to be an empathic, sensitive boy who one day said, "Dad, I'm sorry you can't walk. I wish you could." He was reassured that it was nothing to be sorry for and encouraged to keep talking about it if he wanted to. And he does, but not that often. Having a father in a wheelchair is something he's always known, so maybe for him, there's really not that much to discuss.

He's 13 now and while our journey didn't start off too similar to that of other parents, most of the experiences and challenges are the same. We found him the right schools and were lucky that they were also wheelchair accessible. (Though there exist many schools which have either limited wheelchair accessibility or none at all -- an unfortunate barrier to full parental involvement.) We ride bicycles in the park -- two standard and one hand-cycle. We go on vacation to places everyone else goes to, only we make sure to find the ramped entrances, wide doorways and working elevators.
We're a family just like any other family, even though the roles we play don't always fit into the standard family paradigm. Take recently, when instead of father and son pretending they're warriors fighting to the death, it was me indulging my son's latest obsession. We bowed to each other and then playfully engaged in battle. When it was over (and I was soundly defeated) my son turned to his father and said, "Dad, I wish you could walk so I could beat you to a pulp!"

OK, so not exactly what we pictured when we imagined father-son bonding. But then again, is parenthood ever what we thought it would be? Able-bodied or not, isn't it always so much more?

Tuesday, April 24, 2012

Have Wheelchair, Will Travel. If you are able bodied, think of this as a head's up

Have Wheelchair, Will Travel
If you are able-bodied, think of this as a friendly head’s up.
I take things for granted. I go to Stop & Shop and expect to buy fresh fruit and milk. I flinch when I pull into full serve but I assume the gas will be there to fill up my car. When I turn on my faucet, for the most part, I assume clean, clear water will be there for me to use.
You know another thing I take for granted? Walking.

When I wake up in the morning, I stand on both feet and shuffle my way around the house. I walk to my car. I walk my dog. I walk around the market. Sometimes, when I’m feeling good, I even run. Slow and steady wins the race.

After spending a week on vacation with a family member who is almost exclusively wheelchair bound, I will never take walking and movement for granted again. I will never dismiss the need for all those handicapped spaces at Target. And I promise, never again, to use the special bathroom stalls so I have room to move.

The inability to walk makes even the simplest tasks more difficult. Everything needs to be thought out in advance: moving around restaurants, finding companion bathrooms at public facilities and navigating uneven walkways and raised entries. Very few things are made with complete accessibility in mind.

Then, factor in the looks from those rushing to get past you. Using a wheelchair or a scooter or even a walker, tends to make everyone hurrying around grouse with impatience. I experienced this more than once on vacation. I watched people with arms folded or hands on hips, staring irritatingly at my little family while they waited for the bus to lower and then waited for us to load and strap in.
Maybe I’ve done that. Shame on me.

I never knew. Never lived it everyday. When I was about 10, my grandmother lost one leg to diabetes. I used to watch her dress her stump and rub lotion on it to keep her aging skin from rubbing in the artificial leg. Until she learned to walk with her cane, she'd use a wheelchair to get around her apartment. One day, I got in it and started wheeling myself around the bedroom. To a kid, wheelchairs look like great fun. When my mom caught me, she was not pleased.

"Wheelchairs are not a toy. You'd better hope you never have to use one."

Maybe being in a chair was like crossing your eyes, I didn't want to be stuck that way.
But sometimes, things stop working. Age happens. Injuries happens. Disabilities happen. Being immobile is no reason to stop enjoying all the things that life has to offer and being able bodied doesn't entitle us to a better quality of life than those who need our help.

But for the grace of God...

One thing I know for sure, is that the look I saw on my stepdad's face when he watched the parade and looked out the window of the plane, was irreplaceable. The travelling, while arduous at times, was worth it. Life has so much to offer that it would be a shame if we didn’t make things as easy as possible for anyone who wants to explore them, wheelchair bound or free standing. And if someday, that person is me, I hope the opportunities to travel are not limited by my inability to get to them standing up.
About this column: There are some things I really love about Milford that you should know about. On those weeks, I’ll rave. Then there are things that leave “little to be desired," as my grandmother would say. Those would be the rants. It won’t be difficult to tell the difference. I’ll write it like I see it.

Monday, April 23, 2012

ALS Patients Differ on Treatment Choices in Later Phases of Disease, Penn Medicine Study Shows

April 23, 2012
Two new studies analyzing treatment decisions in late-stage amyotrophic lateral sclerosis (ALS) patients shed light onto treatments aimed to extend the duration and quality of life in this progressively debilitating neuromuscular disorder. Researchers from the Perelman School of Medicine at the University of Pennsylvania found that waiting until the last minute to receive one treatment resulted in not living long enough to experience the benefits. In a separate study, Penn researchers uncovered polarized preferences among patients regarding the value of an expensive, marginally effective disease-modifying drug. The research will be presented at the American Academy of Neurology's 64th Annual Meeting in New Orleans.

ALS, commonly known as Lou Gehrig's disease, is rare, affecting approximately 30,000 Americans. In later stages of the disease, it paralyzes ALS patients' bodies, while minds often stay sharp. Along with other treatments and supportive therapies used in later stages of the disease, many patients receive a feeding tube to ensure nourishment can be obtained when muscles are impaired.

One Penn Medicine study demonstrates that ALS patients who have feeding tubes placed before an emergency situation strikes fare better. Those having surgeries in non-emergent settings were much less likely to die within one month after surgery, compared to ALS patients receiving their feeding tubes under duress. Median survival after the feeding tube surgery was 6 months overall and longer for patients undergoing non-emergent versus emergent placement (7 months vs. 4 months). In addition, mortality rates were worse for patients having procedures done at hospitals that did not regularly perform feeding tubes placement in ALS patients.

"Timing is crucial for placement of feeding tubes in ALS patients," said the lead author of both studies, Amy Tsou, MD, MSc, a fellow in Neurology and a Robert Wood Johnson VA Clinical Scholar. "We've shown that waiting too long can be detrimental and happens too often. In general, it is important for clinicians and patients to proactively prepare and reevaluate treatment decisions as ALS patients enter into different phases of the disease."

In a second study, researchers found polarized treatment preferences regarding Riluzole, the first FDA approved treatment to slow ALS. Patients had sharply polarized preferences about this expensive treatment, which modestly prolongs length of life of ALS patients. In a survey of 98 patients with ALS or Motor Neuron Disease, nearly two-thirds of the patients ranked Riluzole as either the most important (30 percent) or least important (33 percent) treatment option.

Click here to view the full release.