Don’t Miss the Buzz!
Do You Know the Way to San Jose?
By David Korse and Lew Shomer
David and Lew are co-owners of Abilities Expo.
As the year draws to a close, we are happy to report that it has been a great 2010! Abilities Expo has enjoyed record participation from exhibitors and attendees alike. It has been an honor and a thrill to provide a venue for so many wonderful people to experience the products and services that can change their lives.
We are even happier to respond to the countless requests that we’ve received from Northern California residents asking that we bring Abilities Expo to their backyard. After thorough market analysis and vendor input, we are expanding our 2011 roster to include the Bay Area. Abilities Expo will be held at the San Jose McEnery Convention Center from November 18-20, 2011!
The 2011 Atlanta event, scheduled at the Georgia World Congress Center, will now move to February 17-19, 2012. To sum up, next year’s Expo line-up will be Los Angeles, New York Metro, Chicago, Houston and San Jose. Look for the same cities plus Atlanta in 2012.
We are excited to meet many of you in Northern California and hope to continue to bring Abilities Expo to the community of people with disabilities in new cities.
Product Spotlight: PenAgain
PenAgain will be featured at the Atlanta Abilities Expo on October 15-17, 2010.
Turns out that the thousands of years that humanity has been writing is no match for inventor Colin Roche. His creation, the PenAgain™, is an innovative, ergonomic writing instrument that offers endless writing possibilities for people with disabilities.
The patented tripod design allows for writing comfort, refinement of motor skills and provides the opportunity for people with physical constraints to write without pain and frustration. The wishbone shape creates proper hand posture and forces a change in body mechanics. Writers use less motion and keep hand muscles more relaxed which result in an increase in efficiency, capability and stress reduction. By removing the need to grip the pen, it actually frees up the fingers to simply direct the pen, whether you are a lefty or a righty.
The PenAgain’s “right way to write” has come to the aid of both children and adults with arthritis, EDS, down syndrome, CTS, autism, Parkinson’s Disease and any other condition which restricts the ability to write with conventional pens and pencils.
“The skillful design of the pen allows a more comfortable thumb position, requiring less acute flexion at the interphalangeal joint to hold the pen,” said orthopedic surgeon David Schiffman, M.D. “Many patients with thumb arthritis or inflammation have found this relieves much of their pain symptoms while writing.”
In addition to several adult-sized products, PenAgain has had tremendous success with its smaller Twist ‘n Write Pencils for kids.
Teacher Marlene Teehan feels that this unique design is extremely helpful to all young writers, especially those with learning disabilities. “It gave them more time to concentrate on writing and less time on concentrating on holding the pencil,” she said. In a brilliant marriage of form and function, the PenAgain is not only helpful to children with Down Syndrome, autism or hand and thumb weakness, its cool design also sparks an excitement for writing from children with ADHD.
In fact, the concept to revolutionize millennia of writing originated two decades ago when Roche himself was a kid, while he was serving time in a Breakfast Club-style detention.
A lunchtime furlough gave him a chance to peruse the flea market in the high school parking lot where he purchased a flexible pen with a toy robot at the end. Plagued by hand cramps, Roche realized that the legs of the upturned robot provided a supportive crutch for his index finger. He went home, and after an evening in the garage making adjustments and ruining his father’s tools, the PenAgain was born.
Years later, Roche teamed up with engineer and college buddy Bobby Ronsse to transform his childhood invention into the world’s most comfortable pen, now sold in 20,000 retail locations around the world and at the Atlanta Abilities Expo on October 15-17.
For more information, visit www.penagain.com.
Houston Gives Abilities Expo a Big Texas Welcome
Abilities Expo achieved record success for its new event in Houston, welcoming more attendees than any other debut event. A total of 2,036 registered adults crossed the threshold to find out more about life-enhancing products and services, to attend compelling workshops and to have some Texas-sized fun at the events and activities.
Together with non-registered children under the age of 18—estimated at an additional 25%—the actual attendance exceeded 2,500.
Those are the numbers and, while impressive, they don’t really tell the story or begin to the capture the magic. What is it about Abilities Expo? There are other consumer shows with vendors, education sessions and cool events. They are worthwhile, but almost no one ever sheds joyful tears or comes away with their lives changed.
The thing that makes Abilities Expo unbelievably special is you—the attendees, the exhibitors, the community of people that support this event. Maybe it’s the challenges that you overcome each day or just the amazing size of your hearts, but it’s definitely you.
Here are just a few of your stories from Houston…
Celeste Juarez is an adorable, vivacious 11-year-old from New Braunfels, Texas whose world recently opened up wide. Celeste was born without legs and her arms are small and lack full mobility. Up until last year, she had never attended school because her parents were fearful that a public school would be ill-equipped accommodate their youngest child and that her condition would subject her to ridicule from her able-bodied peers.
When an aunt made inquiries into Celeste’s placement in a local elementary school, everything started to change. The administration and students were wonderful, but Celeste needed more help to make the most of her abilities. Though both parents juggle three jobs between them, they did not make enough to afford a wheelchair and, in one of those maddening Catch 22s, they made too much to qualify for Medicaid. Celeste was using a borrowed one when the school reached out to Abilities Expo veteran Peggy Townsend of the Townsend Rep Group (TRG), an independent rep group supporting and servicing medical retailers and dealers—including a number of wheelchair manufacturers—throughout the United States.
“I just fell in love her,” recalled Townsend mimicking the impression of teachers, administrators and everyone who meets this extraordinary little girl. Once Townsend entered the picture, events snowballed. She called Rick Hayden, vice president of Colours Wheelchairs, who agreed to donate their Junior Razorblade chair and customize it to fit Celeste’s unique body type. From there, she petitioned, Todd Hargroder, president and CEO of Accessible Designs Inc., who furnished the chair’s E-brakes. National Sales Manager of Supracor Brad Stern came through with a high-end therapeutic seat cushion, bringing the finished wheelchair to a value of between $8,500 and $10,000. Her colleague and Branch Manager Britt Sitzes of National Seating & Mobility Austin also generously gave his time and expertise to measure Celeste for her custom fit and train her in the chair’s operation.
Now Celeste takes joy and pride in the simple action of independently rolling herself to the cafeteria for lunch. “Something we take for granted everyday is such a huge reward for her,” Townsend said who is continuing to advocate for the Juarez family.
Though barely in her tween years, Celeste already has a job which she performed admirably at the Houston Abilities Expo. She is the first member of Junior Team Colours, a group of five exceptional young people with disabilities who have been chosen to be role models for other children with special needs. Her positive attitude and infectious personality now have an international forum where she can demonstrate by example that just because you use a wheelchair, doesn’t mean you stop living life. In return for her role has a spokesperson, Colours will maintain her wheelchair and supply her with new ones as she grows to adulthood.
Celeste’s family is overwhelmed and overjoyed by the outpouring of love and support that made such a difference in the life of their daughter. Her mother, Grace Juarez, was amazed by the scope of Abilities Expo. Until she experienced the event firsthand, it hadn’t hit home just how many other people also have disabilities.
The Brothers Bruen
Twin four-year-olds, Kai and Ryder Bruen, have Cerebral Palsy and hydrocephalus with VP shunts as a result of brain hemorrhages due to their premature birth. They have had 13 surgeries between them and Ryder leads with nine. Realizing that their hometown of Lafayette, Louisiana lacked the necessary resources for the boys, their parents made the decision to sell their home, close their two businesses and relocate to Houston.
Shortly after arriving, they saw two ads for Abilities Expo and made plans to attend.
“We slowly made our way through the Expo and knew that we had made the right decision,” said Heather Bruen, the boys’ mother. “I knew I was going have a bit of a learning curve when we moved here, but the Expo made my job as a parent of children with disabilities a lot easier.
While the parents reveled in the contacts they made with the Families CAN Program, United Cerebral Palsy, an adaptive sports program and many other non-profit organizations, the highlight of the kids’ day was the Super X Fun Course. Kai and Ryder had so much fun on the course’s twists and turns, they had to wrap up their day with a pit stop at the free Wheelchair Repair Pavilion to get things tightened up.
And for the icing on the cake, Bruen also left Abilities Expo with promising job leads.
Wheelchair Super X Fun Course
This event from Trevor “Trevair” Snowden was a winner with everyone regardless of the level of ability. Not even blindness stopped one brave individual from giving it his all! Some tackled the course on the Trevair Chair with Electric Scooter while others opted for manual chairs under their own power. The one unifying factor was the look of sheer triumph on their faces. See for yourself…
An actor and author whose iconic work spans generations, Henry Winkler was a huge hit and turned the energy way up. “The Fonz was awesome!” was the general consensus.
Along with a leading expert physician, Winkler was there to speak at a well-attended workshop entitled Understanding Upper Limb Spasticity, sponsored by the “Open Arms: Raising Awareness of Upper Limb Spasticity” educational campaign.
During the session, he shared his personal story about his mother’s struggle with upper limb spasticity before today’s cutting edge treatments were available. He spoke of what it was like for her to go from being extremely active to being unable to perform simple tasks.
Winkler even put the tale of his own experience with significant learning disabilities into a context of overcoming disabilities. He revealed that even though he is in the bottom 3% of the nation academically, he can point to a lifetime of achievements. “Math was a disaster, history was impossible, but at lunch I was very good,” he joked.
Following the workshop, Winkler clearly enjoyed himself as he did interviews, posed for pictures and talked with Expo goers. As a result of his long history of working with Cerebral Palsy organizations, he has a tremendous reputation within that community and was very popular with attendees. In fact, he reunited with a women with CP that he met 20 years ago and still remembered.
Winkler will also participate in the upcoming Atlanta Abilities Expo on October 15-17, 2010.
“Everyone really liked the focus on ‘ability’,” commented Sarah Galbraith Laucks, director of education and events for Abilities Expo. “People in this community deserve to have whatever they need so that they can do whatever they want to do.”
Abilities Expo would like to extend a warm thank-you to all of the Houston participants. You made the show great and we look forward to seeing you again on August 26-28, 2011!
You Deserve the Best Mobility Device/Wheelchair and Here’s How You Get It
By Sarah Galbraith Laucks, CMP
Sarah is the Abilities Expo Education and Events Director and also provides consulting services for other disability organizations.
Some of the most common questions received at Abilities Expo revolve around the process of acquiring a new wheelchair. From challenges with funding, to seating that doesn’t suit, to a chair that doesn’t meet your needs, it’s clear to see why many people find the process to be complicated.
To get a clearer view of what users should experience when choosing a new wheelchair, we talked with Ann Eubank, MSSW, OTR/L, ATP, executive director of Users First Alliance. The Alliance seeks to ensure appropriate access to seating and mobility equipment by empowering wheelchair users, clinicians and providers with education and information resources that inspire action and motivate change.
Ann distilled the process into six key steps (see below). She also stressed a few key points including:
- The process will be unique because your needs are unique.
- Putting in the time to prepare will help a lot.
- Consider the pros and cons of every option presented.
- Shop for function and service (not brand).
- Sometimes you’ll need to push and advocate for what you want.
Step 1: The Prescription
Work with your physician. Have them write you a prescription for a “custom wheelchair and seating evaluation.” “Custom” is best to obtain results that will best support your health and needs long-term.
Step 2: Locate a Seating Clinic with Seating Specialists
A Seating Clinic will offer you a variety of seating and mobility products. Most importantly, you want a clinic that is staffed by seating specialists. These are therapists with training to help you make decisions about which devices will best meet your needs and lifestyle. Look for therapists with the ATP designation. ATP’s, or Assistive Technology Professionals, are certified by RESNA and specialize in assistive technology. If at all possible, go to the clinic so you can work with your seating specialist in person.
Step 3 - Put Some Thought Into It!
This is where your homework comes into play! Prior to your visit to the Seating Clinic, spend time considering your current seating system, and what you want in your next system. Take notes. Write down anything that comes to mind. Be specific and don’t hold back. Share all of this information with your Seating Specialist.
To get started, consider the following questions that User’s First Alliance recommends asking:
- What do you like and not like about your current wheelchair?
- What do you want your chair to do for you?
- How long do you sit in your chair each day?
- How long are you outside each day?
- What kind of transportation do you use?
- Have you ever had skin breakdown (pressure sore)?
- Can you do all the activities you would like in your current wheelchair?
- What activities would a new wheelchair allow you to do?
What will your ongoing needs be? How will your body change in the coming years? You may want a chair that can grow with you as your needs change, especially if those changes will happen in the next five years. Five years is the average length of time a chair is expected to last for you.
Consider how you will drive your chair. Where do you have the most consistent movement in your body? It could be your toe, knee, head, finger or anywhere!
The more time you put into this part of the process, the more likely you’ll be to get the best chair possible for your needs. Don’t be afraid to write down everything you are looking for. Nothing is too small or too big a concern.
Step 4 - Review Your Options
Whether you’re selecting a manual or power wheelchair, you will find that each includes many options to be considered and decided on. Below are common options to review with your Seating Specialist. Remember EVERY option has pros and cons. It’s all about striking the right balance to meet your needs. The more you learn about the many options available, the better equipped you’ll be to make these choices.
- Folding or Rigid (non-folding)
- Wheels and Axles
- Types of Tires
- Seat Pan that has adjustment for optimal positioning (called squeeze or dump in the seat). This provides more stability in your trunk.
- Make sure your arms contact the wheel at the right location to protect your shoulders from pain or injury
- Designer colors, spinners, chrome and other fun things—your wheelchair should reflect your personality!
- Power Seat Functions: Tilt, Recline, Seat Elevator, and Power Legs. Tilt is when the whole system tilts together (no change in seat to back angle). Recline is when just the back of the chair moves. Seat elevator shifts your seat up and down. Power legs elevate the leg rests. All of the power seat functions allow your body to move frequently and effortlessly which is the most normal state for you to be in. Typically a body cycles through positions every 10 seconds.
- Size and Drive Wheel Location. Choosing between front, mid and rear drive wheel will have various impacts on how your chair maneuvers. Try all three to see which you like best.
- Base and Seating System. You may want to view these parts as separate. Some manufacturers offer a variety of seating systems and bases that can integrate together.
- Cushions. Almost any cushion can go on any wheelchair—that’s important to know. Items to consider include how you transfer, if you slide and your history with pressure sores. It may be necessary for you to use a thicker cushion so your body is safe from a pressure wound.
Step 5 - Finding the Money
We’ve all heard the story. Someone finds the perfect chair, they get very excited about the possibilities...and then someone tells you your insurance will not cover the cost. User’s First Alliance advises strongly—do not give up if this happens. You may need to push and advocate to get what you want and need. If you learn your insurance will not pay be sure to ask why and get this information in writing. There is a reason behind their decision and the better you understand it, the more likely you are to solve it. Ann says, “Ask why, why, why, why?” A common response is to say you don’t qualify for an option. Ask what you need to do to show that you do qualify. Ask if you can appeal. Turn to your seating specialist for assistance; this is where they can provide help. Remember it’s your insurance company—you can talk directly with them about what is medically necessary for you to get the device. By pushing along this path you may find you can get your equipment much quicker. Often, some additional documentation addressing the reason for denial will be all you need. You will be more successful if you view yourself as the leader of this process. You are the only one who can truly advocate for you. Use your relationship with wheelchair professionals to help you, not do it for you.
Step 6 - You are Shopping for Function and Service
Keep this step in the back of your mind all the way through the process, Ann says. “You’re not looking only for a specific brand, but the functioning of the wheelchair and the service from the supplier.” The supplier may carry a variety of brands and is responsible for servicing the wheelchair. First you want to get the chair you need (function). But that’s only half the battle. Your chair will be with you for some time, five years or more. You want to be working with a supplier who will provide good service. Do they have ATPs on staff? Are they a member of NRRTS, the National Registry of Rehabilitation Suppliers? Find out in advance what you can expect for service and think about how that will fit into your daily needs. Will you need to go to the location for service or will they come to you? Is their service available 24 hours a day? Do they carry all the models of equipment that are part of your seating system? Take the time up front to form a good relationship with your supplier. You’ll be thankful in the future!
For More Information and Resources
We definitely discovered there is a lot to think about when choosing a new wheelchair. You cannot sit back and rely on others—being a part of the process is so helpful to realizing your dream mobility device. Put time into preparing, consider pros and cons, shop for function and service, and keep in mind that you may need to push and advocate for what you want.
Looking for more information?
Come to an Abilities Expo to meet with a User’s First Alliance representative as well as see and try the many mobility devices available. Visit www.abilitiesexpo.com for show dates and times.
Other key websites to visit include:
Jen 2.0 Emerges!
In the August Buzz, in the first of a two-part series, we introduced you to Jennifer French, a women who became a quadriplegic as the result of a snowboarding accident and who was planning to undergo an operation to upgrade her FES system.
While this is not the official Part Two, we did want to let you know that her 8-hour surgery, which took place on August 30 at Cleveland’s MetroHealth Medical Center, was very successful!
You can follow Jen’s progress—and even read about some of the surgical details posted by her rehab therapist—in her blog, Stand By Me. Stay tuned for more detail in our in depth follow-up article which will appear in the January 2011 Buzz.
Do You Know This Kid?
We love the picture of this young Houston Abilities Expo attendee and would like to ask him for his help in promoting future Expos. In addition to posing for this shot, this wheelchair user also earned a trophy for this skill in completing the Wheelchair Super X fun course. If you know him, please contact us at firstname.lastname@example.org.
The first person to identify this boy will be the proud owner of a free Abilities Expo fleece sweatshirt!