United for Independence in Orlando
Disability consumers and professionals unite in Orlando, Florida, to promote independence and highlight cutting-edge research in the field of spinal cord injuries and disorders.
By Tom Scott
United Spinal Association’s 2nd Annual Independence Expo–the premier event to help improve the quality of life for Americans living with spinal cord-related disabilities—returned to the Gaylord Palms Resort and Convention Center in sunny Orlando, Florida on August 9-10, 2008. Attendees, including individuals with disabilities, caregivers, and therapists, had an opportunity to explore over 100 vendor exhibits featuring life-enhancing products and services, and participate in 12 informative workshops covering a variety of disability-related topics.
“We had a fantastic turnout for this year’s Expo,” said Paul J. Tobin, president and CEO of United Spinal Association. “I’d like to personally thank everyone involved, including all of the exhibitors and attendees for making this event extremely memorable and rewarding. I am proud to have had the opportunity to gather with so many individuals within the disability community from across the country that strive to make a difference and create outlets to freedom and independence for us all. We hope to continue to host the Independence Expo for years to come and build upon its success.”
On Exhibit
Some of this year’s notable exhibitors included Florida-based U Can Ski 2 (www.UcanSki2.com), an organization sanctioned by USA Water Ski that promotes sports and recreation for people with disabilities through adaptive water skiing. Providing clinics and instruction to all age groups, U Can Ski 2 enables individuals with disabilities to improve their quality of life and experience the thrill of adaptive water sports.
The Permobil booth (www.permobilusa.com), with a variety of power wheelchairs on display, was also humming with activity most of the weekend as representatives fi elded questions about the company’s product line and offered attendees a chance to test out new equipment.
In the center of the exhibit hall, Next Mobility (www.nextmobilitynow.com) assembled a ramp to demonstrate the DeltaGlide technology behind its line of power assist wheelchairs that makes pushing up inclines effortless and diminishes the stress some mobility equipment can place on the body.
New Horizons Service Dogs (www.newhorizonsservicedogs.org), a nonprofit organization that partners highly trained dogs with people with disabilities, mostly in the area of wheelchair and mobility assistance, was also a popular stop on the exhibit floor. Attendees got a chance to meet (and pet) some of the dog breeds (Labrador retrievers, golden retrievers, German shepherds, and border collies) that make loyal companions to people with disabilities and help maintain their quality of life and independence.
Attendees worked up a sweat at the RehaMed International (www.grouprmt.com) booth, where representatives gave instruction on using the VitaGlide Wheelchair Fitness Machine, which helps tone the upper body by increasing the range of motion and involvement of more muscle groups, resulting in a more effective and efficient workout when compared to traditional seated fi tness systems.
Prime Engineering (www.grouprmt.com), a designer of standing systems to maintain the health and well-being of people with disabilities, spent time speaking to attendees about the positive effects such systems have on the body and allowed many to try it out for themselves.
United Spinal also raffled off two airline tickets to anywhere in the continental USA provided by AirTran Airways. The proud winner of the tickets was 22 year old Harry Lee Morgan of Port Orange, Florida, who is paralyzed from a spinal cord injury sustained in a body surfi ng accident 8 years ago. As for his travel plans, Morgan is still not sure how he will use the tickets, but said he is looking for a special girl to share them with.
Workshop Highlights
A full two-day schedule of informative workshops covering everything from travel and employment to accessible housing and caregiver issues attracted hundreds of attendees, offering an opportunity to raise questions and concerns with diverse panels of disability experts and featured presenters. Below is a glance at some of the workshops offered this year:
“What About Me?” Caregiver Issues
Workshop Moderator Robin Kohn, program coordinator of the UCF School of Social Work and coordinator of the Greater Orlando SCI Network, gave a brief overview of the issues people face when caring for loved ones with disabilities. “There are 44 million plus Americans right now that care for others. That’s an incredible amount,” said Kohn, who highlighted a number of important topics, including the high burnout rate among caregivers, the importance of developing stress management and problem-solving skills when caring for loved ones, and identifying the needs of those receiving care. She then introduced the audience to a diverse panel of caregivers and people with disabilities, including a parent who is caring for a daughter with spinal cord injury (SCI), a man living with SCI who receives care from his wife and hired attendants, and a couple impacted by ALS (Lou Gehrig’s disease).
“Caregiving is an art. It is a privilege. It is the hardest job you’ll ever do. But it’s the most rewarding thing. There are no roadmaps. We have no textbooks. It’s one day at a time. You must have a strong faith and a real positive attitude. Don’t let it get you down, it will try,” said Lynn Campbell, whose husband Cedric was diagnosed with ALS.
The panel discussed the multiple roles that caregivers provide to their loved ones and the difficulty in managing each one. “Not everyone can realistically afford attendant care, especially in this economy. And so it does fall on family. It does fall on friends. And if it’s a family and it’s a relationship such as partner and partner, spouse, or fiancé, you do have to juggle and find a balance between the intimacy part and being in a relationship and then also being the caregiver. And it’s a question of how you fit it in to your whole scheme of things and making it work,” added Kohn.
David Moore, who with the support of his wife is caring for his teenage daughter Ashley, who was spinal cord injured in an automobile accident, offered his perspective on caregiving. “You must take it one day, one miracle at a time. We are 11 years into Ashley’s injury and we really have taken that philosophy. We certainly know that Ashley and her high level of injury and the severity of that injury, for all practical purposes she should have passed away at the injury site. From our perspective her life is a bonus and we don’t take that for granted. We have a lot of opportunities that other parents don’t normally have. We would rather be working on Ashely, taking care of her, ‘cathing’ her, fighting infections and pressure sores, and doing all those things that are involved in taking care of someone with a spinal cord injury. I’d much rather be doing that than visiting her grave. So that’s how we approach every day,” said Moore.
Emphasis was also placed on the need for caregivers to find time to take care of their own needs, whether it is spending a few hours relaxing, exercising, or participating in activities they enjoy. “You need to take time away, but sometimes time away is even worse than if your just away for a few hours or in another room. Because the time it would take for me to go away for two or three days and the arrangements that would have to be made, I would be more frustrated, angry and upset than if I just took an hour away,” added Campbell.
Living with SCI for a number of years, Bob Melia said that he has started to rely more on hired attendants so that he could maintain the lifestyle he chooses without placing the burden on his wife, who is taking care of their 5 year-old son. In hiring attendants to assist with caring for loved ones, the panel discussed being open- minded and choosing someone trustworthy and dependable. It may also help to fi nd someone who has a similar approach to caregiving and is able to perform tasks in a similar manner. If there is a disagreement in the method of care, it’s important that the caregiver communicates with the attendant about these issues and resolves them in a civilized manner.
Other suggestions for becoming a successful caregiver include maintaining positive communication with your loved ones by openly addressing both negative and positive aspects of the caregiving relationship, using humor to deal with daily tasks, seeking support or counseling when needed, knowing your own limits, and having a positive attitude in whatever role you play.
Let’s Get Away—Travel and You
With a focus on the issues travelers with disabilities encounter when planning a vacation or trip, workshop participants had an opportunity to address some of their questions and concerns with a panel of experts that specialize in disability travel. The panel included Kleo King, senior vice president of Accessibility Services for United Spinal Association; Rachel Tyler, Hawthorne Suites, Mircotel Inn & Suites; Russel Haynes, training specialist, Greyhound Lines, Inc.; Ed Kelly, director of Sales and Marketing, Vega Transportation; and Skip Scribner, Advanced Medical.
After a brief introduction by each panel member, the floor was opened for questions. One participant wanted to know what types of questions to ask when making accessible hotel reservations. “One thing you should always keep in mind when making a reservation is to let the hotel know that you need an accessible room and if they provide a roll-in shower. You really want to get the details about whether there is a bath bench and grab bars. You also want to make sure there is clearance underneath the sink and that all pipes are covered so that you won’t get burned. And if you travel with lifts, you want to make sure the accessible room has a bed frame and not a bed box because with lifts, for transference, you need a frame and you need to be able to slide the lift underneath. Most importantly, make sure the bathroom and guest room doors are 36 inches wide and that they swing outward not in,” said Tyler.
Another participant was concerned about the location of accessible rooms at some hotels being located on high floors and felt that this was a hazard to wheelchair users in emergency situations such as fi res. “Building codes specify where the rooms have to be placed. Accessible rooms have to be spread among the different types of rooms and the different amenities. So if it’s a suite, there also has to be an accessible suite. If there are connecting rooms, one of the rooms must be accessible. So they have to distribute the accessible rooms throughout the hotel. One of the questions when booking a room should be what is the lowest floor that includes an accessible room,” King said.
Others in the audience mentioned pitfalls they have encountered when booking hotel rooms, such as being assured by hotel staff that a room is accessible only to find out upon arrival that it is not and only includes a tub with grab bars. “You should specify whether you want a tub with a bench or a roll-in shower room. If the person answering the phone doesn’t seem to know what you’re talking about ask to speak to a manager. If the manager is not very helpful, ask to speak to the head of either maintenance or housekeeping. Housekeeping staff is in those rooms. They know which rooms are located where and what the amenities are. They may not know the dimensions, but be persistent and ask them to get the dimensions for you. If you feel like you are not getting the correct answers, go up the chain until you get the correct answers,” King added.
Information was also offered on finding the most ADA-compliant cruise lines and the importance whether or not a room has been retrofitted for accessibility. “You always need to find out the age of the ship. Last year I was on a ship that they are retiring at the end of this year. It did have accessible rooms but it was an older ship so they had to retrofit it. So when they retrofitted it to make the bathrooms accessible, the living space was compromised making the room very uncomfortable. The bathroom, although now accessible, was almost bigger than the living quarters,” King said. “There are also often issues with shore excursions especially when traveling in the Caribbean. They don’t have the same laws as we do in regards to the ADA and you need to find out if the excursion itself is accessible. Are you going to some port that was built 200 years ago and has steps? You also have to fi nd out if the transportation from the ship to the excursion is accessible.”
Tom Scott is staff editor.