VOLUME 2 NO. 4
Amputee Coalition - National Limb Loss Information Center
900 E. Hill Avenue, Suite 205, Knoxville, TN 37915 · 888-AMP-KNOW (267-5669)
Richard Mooney, editor; e-mail: firstname.lastname@example.org - Becky Bruce, coordinator; e-mail: email@example.com
. . . Dedicated to Enhancing Support Group Leadership Skills
Leadership Skills . . . .
SWOT Analysis - A Structured Way To Plan
by Dick Mooney
How many of us complain about the problems our groups are having but throw in the towel before we analyze the problems and develop a plan to fix them? How many of us are inclined to charge off to implement a new program idea without really thinking it through and developing a sensible plan of action? These are very human traits but, unfortunately, they constitute real barriers to managing our groups effectively. One of our most important jobs as support group leaders is to shape the future of our groups. SWOT Analysis is a tool that can help us do that.
What Is SWOT Analysis?
SWOT stands for Strengths, Weaknesses, Opportunities, and Threats. SWOT Analysis is a structured way to analyze these four factors as a preliminary step to 1) developing a strategic plan to establish or improve our "business" in general, 2) helping us implement individual program improvements that are needed, and 3) enhancing our personal skills as leaders.
SWOT Analysis is a must for leaders of new support groups. It will help them to get their groups off on the right foot from the very beginning and plan the group's development in a sensible way, instead of thrashing around trying different ideas or simply copying what others are doing. But SWOT Analysis is also helpful for established groups that may be in the doldrums or at a crossroads in their development.
SWOT Analysis isn't an end in itself. Rather it's a way to identify and define facts about our internal and external environment so we can rationally decide what needs to be done. Another way of saying this is that SWOT Analysis is a process that allows us to prepare to grab opportunities and guard against threats--to starve the problems and feed the opportunities, so to speak.
SWOT Analysis isn't new so don't shrug it off as just another Harvard MBA brainstorm. The term grew out of the strategic planning field when business leaders struggled to find a structured way to analyze their businesses' core competencies and liabilities in relation to their customers' needs and competitive pressure from other firms. The purpose of the strategy, of course, is to be really clear before taking a direction.
How To Use SWOT Analysis
The first step is to understand Strengths, Weaknesses, Opportunities, and Threats.
Strengths and Weaknesses are internal factors.
Your group's Strengths are things it does well--factors that enable it to meet the needs of its established members, new amputees, and the healthcare community in the area it serves. Effective leadership, strong finances, an active volunteer corps, interesting meetings, and thriving programs, such as peer visitation or a newsletter, might be strengths.
Your group's Weaknesses are things it does not do well. They may be limitations or deficiencies in your resources--both human and financial. They may consist of poor leadership skills, weak or nonexistent finances, lack of committed volunteers or team spirit, meetings that are poorly attended, absence of trained and committed visitors, lack of an effective outreach or marketing program, or they may simply be client needs or situations your group fails to meet well.
Opportunities and Threats are external factors.
Opportunities are things you would do if only . . . . They may consist of your clients' informational needs that aren't being met, changes in the managed care environment that your members need to be informed about, unexploited funding sources such as local businesses or foundations, or other sources of support such as alliances with local certified prosthetists, hospitals, or sources of volunteer help.
Threats are ticking time bombs that must be defused before they blow you out of the water. Threats may take the form of imminent leader burnout, fund sources that are drying up, a shrinking membership base, threatened loss of a free meeting place, a newsletter editor who has no backup, or disgruntled members who are talking about splitting off and forming a new group.
The next step is to take four pieces of paper and label them "Strengths," "Weaknesses," "Opportunities," and "Threats." Or you can divide one large sheet of paper in half vertically and horizontally and label the four sections.
The next step is to fill in the blanks. You can do this yourself, of course, but a method I've found particularly useful is to do it in a brainstorming session with your Board, a group of volunteers and/or active members, or even everyone at a regular group meeting. The interactivity of this method usually produces a more complete list. With a group, you will want to use a flip chart and broad felt tip pen or four flip chart pages taped to the wall. Either of these is better than using a blackboard since you won't have to transcribe all the entries to take them away for further study and analysis.
If you will be facilitating this brainstorming session, be sure to remember the hints about how to be a better facilitator that appeared in the December, 2000, Communicator. http://www.amputee-coalition.org/communicator/vol1no6pg3.html
Although a significant amount of research or discussion may lie behind the identification of each strength, weakness, opportunity, and threat, keep it simple when you fill in the form.
Strengths - Don't be modest. Spell them out. If you do this with others, you might begin by brainstorming key words that characterize your group and writing them down as fast as people say them. You can easily expand these into complete thoughts later.
Weaknesses - Be honest. It's better to face the bad news now than to construct an unrealistic analysis that won't do what you want it to. You can use the same keyword method if you wish.
Opportunities - When you look at your group's "market" what do you see? What isn't your group doing for its constituents that they need? What does the group do for its constituents that they don't value? Involving member groups for this part of the process is particularly valuable.
Threats - What trends do you see that could wipe you out or could damage your ability to deliver needed services or make them obsolete?
Developing a Strategic Plan - The Most Important Step
The listing and analysis of strengths, weaknesses, opportunities, and threats is by no means an end unto itself. It is only a statement of what you have going for and against you. Without developing a plan to maximize strengths and opportunities and minimize or eliminate weaknesses and threats, the analysis has only philosophical value.
The first step in developing a strategic plan is to select important strengths and opportunities that should be maximized and important weaknesses or threats that should be minimized or eliminated. (Those are the strategic items.) Separate these for further work.
The next step is to take each strategic item separately and analyze it in terms of the internal factors (the tools you have to build with) and the external factors (the damaging forces you have to contend with) that you identified earlier.
The final step is to develop a plan to deal appropriately with each strategic item. Remember that good plans need a goal, a time for completing it, a person to be responsible, and a series of action steps leading to completion.
Although this is a contrived example, it might be helpful to illustrate the process.
The officers and a few invited active members of the Upland Cities Amputee Support Group got together and completed a SWOT Analysis. An important weakness they identified was the group's address list, which was in bad shape. This was also identified as a threat to continued growth. The list was being maintained manually and only included names, addresses, and telephone numbers. There was no information kept about which were amputees and which were healthcare professionals. There was no information about gender, amputation cause and date. The peer visitor records were separate--also manually maintained. This was considered a strategic item because, without more complete, automated records, 1) newsletters and other mailings had to be hand addressed, 2) the collection of dues and donations was made very difficult, 3) marketing media could not be tailored for sending to various constituencies, 4) membership-building efforts were hampered by lack of demographic information, 5) the visitation program could not be managed effectively, and 6) needed management reports could not be made when the Board requested them.
Among the strengths and opportunities identified in the SWOT analysis were good relations with local certified prosthetists and medical equipment dealers, and a significant number of active volunteers and supportive members--some of them having computer experience. Lack of a computer and the failure to capitalize on fund raising opportunities were listed as weaknesses. An apparently ready but unexploited number of local business donors was listed under opportunities.
The group decided the time was right to develop a plan to expand and automate the records. Accordingly, the following draft plan was developed:
Goal By December 31, implement an automated record keeping system that can be used to address newsletters and mail, manage the peer visitation program, support dues and donations collection, and provide information needed by the Board.
The bottom line is, whether or not you choose to use the SWOT technique I've described here, effective program improvement can only be assured if it's preceded by thorough data collection, analysis, and planning.
More Regions, More Reps, and More Faces Behind the Names
by Kathy Spozio
This is the third in a four-part series intended to acquaint you with the twelve people who volunteer as Regional Representatives of the Amputee Coalition. In the April 2001 issue http://amputee-coalition.org/communicator/vol2no2contents.html, the role of the regional rep was detailed and volunteers Joyce Arthur (Region D), Karen Gardner (Region J), and Ed Collum (Region I) were introduced. The June issue http://amputee-coalition.org/communicator/vol2no3pg2.html featured Karlene Kaufmann (Region C), Charlie Steele (Region A), and Betty Thompson (Region E). Now its time to meet three more volunteers
Liz Zemke, from Region K (California, Hawaii, and Nevada), has been a regional rep forever. Well, okay, not really forever, but according to Liz, "since before there were official regional reps." A below-knee amputee for 6 years as a result of an auto collision, Liz started her unofficial regional representative functions a short time after her amputation at the invitation of Susan Moonan, a former Amputee Coalition support group outreach committee chair, and the late Georgie Maxfield. About a year later, the position was formally initiated.
With 30 years' experience as a registered nurse in a variety of settings around the world, Liz's training and background are a natural for the volunteer service she takes on. As part of her regular (paid) work, she cares for people who have had catastrophic injuries on the job, some of which result in amputation. This "in" gives Liz the perfect opportunity to see that new, or soon to be, amputees find their way to the proper medical, prosthetic, and rehabilitative care. Perhaps part of her drive to take on this supportive role is a result of her own positive experience. While planning for her amputation in 1995, Liz attended the Amputee Coalition conference in New Orleans where she had a chance to ask all the right questions, visit vendors, meet other amputees, and get much needed advice. Then Liz says she "coupled that experience with a great surgery, a fantastic prosthetic process, and a little hard work and determination and managed to have a very successful outcome to what started out to be a devastating, life-changing event."
Described by inMotion magazine in its November/December, 2000, issue as "unconventional in spirit and form," the Central California Amputee Education and Support Group (CCAESG), of which Liz is the founder and facilitator, is the impetus behind a well established and respected peer visitation program. According to Liz, the CCAESG is a "contradiction in terms." Less traditional than the conventional support groups many amputees belong to, this California group meets quarterly for pot luck dinners; a strategy Liz believes is less intimidating to some amputees--especially men--and also increases attendance. The CCAESG peer visitation program has come a long way in a short period of five years and proof of their accomplishments can be noted by the official recognition of the program, along with its partner hospitals, from The Joint Commission on Accreditation of Healthcare Organizations (JCAHO) and other reviewing bodies. "The best activity I do," says Liz, "is peer visitation." With the assistance of a few volunteers, she visits an average of five to seven new amputees per week and also contacts five to ten via email, telephone, and regular mail.
In her duties as a regional rep Liz attends to her area by keeping organized and up to date records of all the support groups in her three state region, attempting to contact them quarterly, and trying to stop in at meetings when in the area. She also keeps her eyes and ears peeled in her turf for information about amputees in the news, and passes this along to the appropriate support group that serves that area. Her big goal for the coming year is "to get to Hawaii to set up a group and identify a number of amputees who will be active resources in the islands." Regarding her other two states, Liz says that "Nevada is pretty self-sufficient" as a result of the organization of two active groups which cover the entire state, the Northern and Southern Nevada Amputee Support Groups (NNASG and SNASG). Southern California, in particular, is well organized with associations such as the Mutual Amputee Aid Foundation (MAAF), Amputees In Motion International Inc. (AIM), and Functional Amputees Support Team (FAST). Another regional goal she talks about is working out a recruitment plan to reach all the prosthetists in her area. Liz says she would like them all to "give amputees Amputee Coalition's number and then (send) a referral to the regional rep for more information." And, as if she doesn't already have a full plate, Liz says she is "hoping she will be asked to be on the Board of ABC and AOPA" so that she can liaise with the prosthetists and consumers in bridging the gap that sometimes separates the two communities.
In addition to her regular full time job, and full time (it seems) volunteerism, Liz also manages to be a wife and homemaker, a mother of two adult children, and a grandmother. She enjoys fly fishing, baking, gardening, antiquing, downhill skiing, hiking, and doing fun things with her granddaughter. And this profile wouldn't be complete without mentioning her eight-year-old Chow/Shepherd, lovingly known as Reaper. Liz says "He's been at my side since the accident and still does not fail to lick my stump every night before I go to bed. He is a true friend."
The fact is, Reaper is the same kind of true friend to Liz as she is to so many amputees in her region and beyond. Thanks for all your dedication and time Liz. Your enthusiasm for helping the amputee community seems limitless.
233 E. Portland Av.
Fresno, CA 93720
Region L has the pleasure of welcoming a new regional rep to its four-state area of Washington, Oregon, Alaska, and Idaho. Meet Denny Spencer, who is anxious for everyone to know that "Smelling the air and seeing the world from a motorcycle is one of the things I enjoy most."
Four years ago, while riding to work on his Harley, he was hit by a school bus. Not only did Denny lose his leg through the knee, but he also had a torn Aorta, multiple hip fractures, and a broken shoulder. First, doctors predicted he wouldn't live more than an hour, and later said he would never walk again or use his right arm. Concerning the prognosis, Denny simply says, "That was not acceptable." With the support of his wife and friends, Denny celebrated his 50th birthday with a hospital party even though he was still in a coma three weeks following his accident. Convinced that he was dead twice, based on dream-like experiences that occurred while unconscious, he believes that the only reason he survived the tragedy was "because God wasn't finished with me yet." Denny credits his wife with being his biggest supporter and proudly says, "She makes life worthwhile," and he holds a special place in his heart for October 23, the birthday they both share, the day they met, and the day they married. This father of three and grandfather is emphatic when he professes, "My awareness of life now is incredible."
Denny, who attended his first Amputee Coalition conference in Reno, Nevada, in 1999, apologizes for missing the recent Amputee Coalition conference in Kansas City, explaining that he had "just completed a 5,000 mile bike trip from Seattle around the Grand Canyon and up the West Coast," which was planned before he knew the conference dates. "For seven days I never saw a cloud in the sky in any direction.I didn't want the trip to end," he says.
Because it's only been a few months since he took on regional rep duties, Denny hasn't had a lot of contact as yet with many of the groups in his territory, however, he plans to gear up with the help of email and telephone contacts and assistance from the Amputee Coalition national office. And, he quips, "I will also look for reasons to ride my motorcycle to visit them!" So far, Denny has contacts in both Washington and Oregon and has also had a contact from neighboring Canada, even though not part of his territory. With his enthusiasm for life and love of travel, I predict that it won't be long before he also has contacts in Alaska and Idaho as well.
On the local front, Denny facilitates a support group known as the Everett Area Amputee Support Group, which meets the second Tuesday of each month at a local '50s restaurant. Meeting agendas vary from group discussion on individual concerns to special programs dealing with topics such as medication, acupuncture, phantom pain, and prosthetics. Denny also works closely with the staff of nearby Providence Medical Center and one of the local prosthetic facilities to provide services as a peer visitor. He discusses this volunteer activity with a great deal of enthusiasm and says he often shares with new amputees his belief that "I don't have to prove that I'm a man anymore. . . I just need to function."
Denny enjoys the outdoors, likes classical music, and especially loves riding his motorcycle--an activity he often shares with his wife and oldest daughter who both have their own bikes--Harleys of course. His focus is clearly "what I can do, not what isn't possible," and he is very specific when he says that he is "thankful for what I have (and) not sorry for what I've lost." In fact, he makes reference to his accident and being seriously ill as "giving me the opportunity to come back and learn my life's BIG lesson. . . Humility."
Welcome Denny to the Amputee Coalition regional rep team. We hope to see you and your Harley in Anaheim next year. Region L is lucky to have you on their team!
The new regional rep for Region F, encompassing Alabama, Kentucky, Tennessee, and Mississippi, is Linn Jacobs. Following a referral from his prosthetist, who heard about the regional representative position at a professional gathering, and a personal visit from Becky Bruce, Amputee Coalition Outreach Coordinator, Linn decided to join the ranks of regional volunteers in June of this year.
Linn relates that his journey as an amputee began in January of 2000 when he "decided to play podiatrist" on his ulcerated foot. As a result, gangrene set in and within a short period of time he was a below-knee amputee. Like many other amputees, Linn didn't have the benefit of peer visitation during this difficult period of time and says he was "at a complete loss," and that "the word prosthesis was not in my vocabulary." Today, eighteen months and six sockets later, he is hoping to be finally able to have a prosthetic leg that will fit his needs. It's safe to say that Linn's misfortune in having no peer support during the early months of his amputation led him to his present volunteer effort.
The Alabama Association for the Physically Challenged (AAPC) is an upcoming non-profit organization with which Linn is associated. Although quite new, the group has already filed for 501(c)(3) status and is managed by a board of directors that is comprised of health care workers and professionals. While many of the initial members are amputees, all people who face physical challenges are invited to participate. In August, Linn will be representing this group at an Alabama statewide three-day conference where he will, among other activities, staff an informational booth to promote his new support group. Another of his responsibilities with AAPC is chairing the peer visitation program committee, which had its start following the June training of ten of the group's members by Becky Bruce.
Because his appointment as a regional rep was so recent, Linn has had little time to make his presence felt, but his plans for the future are taking form. He says his initial goal is to "get the momentum going" within his home state of Alabama where he has several personal contacts. He also plans to work closely with Becky on getting organized and he has already received calls from a couple of contacts in other states who have found him through his listing on the Amputee Coalition's Web site. Linn praises the resources that the Amputee Coalition offers via its training workshops, Web site and inMotion magazine, and characterizes these resources as the infrastructure needed to implement his personal belief system concerning the importance of support.
Linn, who has had a career in the retail industry and corporate management with Fortune 500 companies, also has an artistic proclivity that manifests itself in his 1995 cartoon creation of "Wally Whale." As described by the Virginia Beach Insider in a past article, "Wally, the brainchild and alter ego of Linn Jacobs, is out to save everything in sight, from oceans and trees to the human race itself." A spoof of sorts, Wally turns the tables on the theme of people saving whales to whales saving people. Linn says, "Wally stands for raising the consciousness of both children and adults on both social and ecological issues." Even Wally's wardrobe, a seven-foot character costume, makes a statement. This marine mammal with a mission selects just the right "Save the (Whatever)" T-shirt for each appearance he makes. Linn says Wally might be found wearing many genres of shirts, from the sublime to the not-so-serious. Examples of slogans range from "Save the American Dream" to "Save Mom from Sunday Night Football." Linn muses that he could see Wally wearing a T-shirt that reads "Save the Differently Abled," a way he prefers to think of himself. . . "not disabled, but now differently abled." There's no doubt that his personal philosophy is expressed through Wally, and he believes that he can now "find another way" to do the things he did and enjoyed before becoming an amputee.
Recently widowed, Linn lovingly shared the philosophy of his late wife as we talked about overcoming adversity and his outlook on life. She said, "It doesn't matter what happens to you, it's your attitude that matters." And it seems that Linn focuses on this advice in his approach as well. Perhaps someday soon we'll be seeing a Wally T-shirt with one of his favorite slogans that reads:
The Three Most Important Things In Life Are:
Welcome aboard Linn, we're glad to have you on the Amputee Coalition team!
3105 Baldwin Brook Dr.
Montgomery, Alabama 36116
For Your Members . . .
Travel Information for People With Disabilities
by Dick Mooney
According to the National Center for Health Statistics, over 34 million Americans--more than 14 percent of the civilian non-institutionalized population--are limited in their activity due to long-term disability. Further, according to the Vital and Health Statistics National Health Interview Survey, Series 10, No. 200, tables 62, 63, 64, at least 1,285,000 of these are amputees. Considering these numbers, plus the impact the Americans With Disabilities Act, it's no wonder that most firms involved in providing transportation and housing for travelers have made special arrangements to cater to the needs of people with disabilities.
Unfortunately, travelers with disabilities cannot afford to be nearly as carefree in making their travel arrangements as can able-bodied people. All travel-related firms simply don't provide the same quality of special-needs services in all locations. Therefore, the challenge for travelers with disabilities is to foresee their special needs in detail and check carefully to make sure those needs will be met every step of the way. The watchwords are plan, check, and double-check. Unfortunately, even when this is done, things sometimes don't turn out as anticipated. So travelers should know how to complain and assert their rights when necessary.
There is a staggering amount of information about traveling with a disability on the Internet. For those who don't have Internet access and those who don't want to spend hours at the computer sifting through this information, however, I have tried to pull together in this article basic information about a broad spectrum of travel issues from a wide variety of sources. I have also included a few references to where additional information can be found.
What To Do Before Your Trip
Your Prosthesis - You wouldn't think of getting in your car and starting a long trip without first getting the car serviced and being certain that it's in good operating condition. Why do less with your prosthesis?
Here are some ideas about what to do, taken from John F. Schulte's article in the Volume 7, No 4 (August/September 1997) issue of inMotion.
The Socket - Clean it with a mild, non-perfumed soap, using a wash cloth. Allow it to air dry, or gently dry it with a soft cloth. Avoid using alcohol or commercial cleaners.
If the prosthesis has a removable liner, take it out and check for small tears or glue separations at the seams. If you use a silicone suspension system, clean and inspect it in the same way.
The Suspension - Inspect velcro for frayed edges or weakness in grip. If it has picked up lint, use a hair brush to remove foreign particles. If your limb relies on a strap to secure it, check for signs of wear or fraying. Also check to see that the rivets holding it to the prosthesis are tight. Check loops or rings for indications of wear, rust, or loose stitching.
The Cover - Check for tears or loose glued areas. Since corrosive salt air and the sun's ultraviolet rays can damage covers, depending on where your travels will take you, you might want to acquire "prosthetic skin" before you leave.
General Maintenance - Check a lower extremity prosthesis for looseness at the knee and foot. Listen for odd sounds from these areas that might indicate a worn component or broken part inside the prosthesis. If you use an upper extremity prosthesis, check also for wear in the cable and harness.
Extra Things To Pack
Your Wheelchair - Needless to say, if you rely on your wheelchair for more than casual use, it should receive a maintenance check also. If your chair has a history of maintenance problems, you may want to take along some spare parts. In the worst case, you will need expert repair services while you are traveling. You will usually be able to get service at a medical equipment supply store where you are, but if not, a bicycle shop may be able to get you rolling again.
Insure Your Wheelchair - If wheelchairs checked as baggage are damaged or destroyed, the carrier's liability is usually limited to a very small amount. Wheelchairs listed as personal property on your homeowners' insurance are covered, but only for theft or loss by fire. The best practice is to purchase commercial loss and damage insurance for the full value of the chair. As an example, State Farm Insurance offers a "Personal Articles Policy" that covers loss from all perils for an annual fee of $2.75 per $100 in value (minimum premium, $30 per year).
Disability Certification - While most providers of services and discounts you will encounter while traveling won't require written certification that you have a disability, some may. Rather than taking off your leg and showing it to them, which you will probably be tempted to do, you should take along a letter from your doctor.
As long as you are doing this, you might want your doctor to include information about your medical history, allergies to medications, and current treatment information including a medication list. Be sure the physician's telephone number is on this document so he or she can be contacted if you should have a medical emergency or if medications need refilling or replacing if lost.
If you are insulin-dependent, the certification should mention that you need to possess syringes. This could save you a lot of trouble if your syringes are discovered in a customs inspection.
Medications - Take two sets of prescription medications with you. Pack one in your carry-on and one in your checked suitcase. This will also provide an extra supply in case your trip is prolonged by unexpected delays. If you have diabetes and use insulin, bring several unopened vials and store them in at least two or three places. This way you'll always have an extra supply if you break a bottle. You might wish to take an insulated lunch bag to carry them in. Also carry a quart jar with a lid or a Tupperware-type box for disposal of used syringes during your trip.
Using Airport-Provided Wheelchairs - Allowing an airport employee to push you to and from your flight is a good idea for several reasons. The obvious advantage is that it can save you a long walk in large airports, even if you can and are willing to walk. Other advantages are: 1) the attendant knows exactly where your gate is located, which can be a significant advantage when you need to make quick connections, 2) you will be pushed around the airport security metal detector and "wanded" instead of setting off the walk-through buzzer and then holding up the line while you try to explain your artificial limb and get a "hand check" there, and 3) if you have to go through customs you will be pushed to the head of the line.
When you book your flights, remember to tell, or ask your travel agent to tell, the reservationist that you will need wheelchair assistance. As insurance, you'll also want to tell the desk agent when you check in and check your baggage, and again tell the flight attendant before you arrive at your destination.
Walk-Through Security Metal Detector - If you elect to walk through the metal detector, be prepared to set the buzzer off and then have to try to explain to the attendant that you have an artificial limb. Some of them may still not understand and you may have to show your limb. It may help to announce that your prosthesis is going to set off the alarm before you walk through.
Preferred Seating - When booking your flights, ask for "bulkhead seating." Those seats are at the front of the section, facing a wall rather than the backs of other seats. There's a lot more space there, making it much easier to get in and out. Most major airlines block these seats for persons with special problems and will be glad to assign one to you, if available. If the bulkhead seats are filled, ask that you not be assigned a seat on an emergency exit row. Instead, ask for an aisle seat as close to the front of the plane as possible. Some aisle seats have arm rests that swing up out of the way. This can be a great advantage when getting into and out of your seat, especially if you will need to transfer from an aisle-chair. Since all planes are different, the reservationist may not be able to guarantee you such a seat but you can try anyway.
If you failed to get a bulkhead seat when you booked your flight, you can try again when you board the plane. Ask the flight attendant if he or she can relocate someone so you can have a bulkhead seat. They will usually try to do that, especially if able bodied people are seated there.
Crutches - If you use crutches, you must be able to put them under the seat or in the overhead compartment. Failing that, the flight attendants will be required to stow them in another location and you'll have to ask for them if you need to use the rest room. For this reason, forearm or collapsible crutches, which will fit under or over your seat, are preferable for air travel.
Wheelchairs - If you travel with your own wheelchair, you may take it down the jetway to the plane but not on board. Airline personnel will transfer you to a special aisle-chair to take you to your seat. They will put your chair in the baggage compartment and will have it ready for you again when you arrive. (Sometimes a small chair will be placed in the cabin closet.) Make sure your name and address is on all equipment that is being stowed below. If you have to change planes, request that your chair be returned to you quickly. Since wheelchair users are last off the plane make sure you allow enough time to make your connection--at least an hour, and at big airports, at least an hour and a half.
Powered Chairs and Scooters - If you plan to take a powered chair or a scooter with you, it is best if you use gel or foam-filled batteries. They are also known as dry cells. Standard acid filled batteries or wet cells must be removed by the ground crew and packed in special containers for transport.
Remove seat cushions and any other parts that could come off and get lost and take them into the cabin with you. Attach instructions on scooters or power chairs detailing how and where to disconnect the batteries, also instructions for any other disassembly or preparation for transport that might be necessary. These instructions will also assist personnel who will reassemble the unit at your destination. Supervise these processes if you can.
If you have a large power chair or scooter, be sure to check cargo size limitations when making your reservation.
Restrooms - Try to use an airport restroom before boarding your flight. This may save you a painful trip to the tiny restroom on the airplane.
Some Airlines Telephone Numbers
Access Amtrak is this major rail transportation company's program that caters to travelers with disabilities. Amtrak maintains a toll-free telephone number at which information on accessibility of trains and stations and assistance for disabled passengers can be obtained. Call the "Rail Travel-Amtrak Special Movements Desk" at 800-523-5720.
Reservations - If you will need an accessible bedroom accommodation, transfer seat, or wheelchair space--even if you are traveling on an unreserved train--you should make reservations early. Such spaces are limited and they will be held only for persons who need them until 14 days before departure, after which they will be made available to the general public.
You can also make an advance request for seating near accessible restrooms and lower-level seating in bi-level rail cars. Although Amtrak does not offer assigned seating, they will attempt to accommodate these requests on a first-requested, first-served basis.
The Amtrak general reservations number is 800-872-7245
Discounts - Amtrak offers a rail fare discount for passengers with disabilities. To receive the discount, you are required to provide written documentation of disability at the ticket counter and when boarding the train. Types of acceptable documentation are an identification card that many transit systems provide, a membership card for a disability organization, or a letter from a doctor. (Note: Because you might qualify for another discount that might exceed the disability discount, you should question the agent carefully about this when making your reservation.)
Stations - Most Amtrak stations are accessible to passengers with disabilities but all will not be until the year 2010. To determine accessibility of the stations you will be using, check with an Amtrak Reservation Sales Agent or the Rail Travel-Amtrak Special Movements Desk.
If you will need assistance at the station, you should make such a request when you make your reservation. Wheelchairs and wheelchair lifts are available at most staffed stations. Amtrak employees can provide help to and from restrooms and help with stairs. For this service, contact the Customer Service office, available at the larger stations. To assure you receive the help you need, you should arrive at the station at least one hour prior to departure time.
Boarding and Detraining - The assistance you may need when boarding or detraining will depend on the type of train and the station. Some stations have high platforms that are level with the train door. Bridge plates are available if needed. . Other stations that have low-level platforms provide station-board lifts (weight limit: 600 lb). Trains operating with bi-level Superliner and California car equipment board on the platform level using a wheelchair ramp that is carried on board the train.
Train Accommodations - Amtrak trains currently have at least one coach car with reserved accessible seating and an accessible restroom. Overnight trains offer accessible seating and restrooms in at least one coach car and one accessible bedroom in each sleeping car. (See the following two paragraphs for details.) Accessible seating includes space for a passenger using a wheelchair, a transfer seat, and storage for the wheelchair. (Because there is only one accessible bedroom in each sleeping car, you should reserve early.)
The Superliner accessible bedroom is a lower-level room that provides ample space for a wheelchair. The room measures nine feet, five inches by six feet, six inches. This room occupies the entire width of the train and is designed for use by a passenger with a mobility impairment and a companion. Two beds are provided: one upper berth folds from the wall, and the lower berth is formed from the two facing seats. The restroom is separated from the rest of the room by a privacy curtain and features hand grips and space for full wheelchair turning radius. there are attendant call buttons in both the bedroom and restroom areas, and the room is completely accessible from the outside aisle.
The Viewliner accessible bedroom is also designed to accommodate wheelchairs and is designed for a maximum of three adults, however, it is most comfortable for two people--one with a wheelchair and one without. The room measures seven feet, one inch by six feet, eight inches. This bedroom provides a sofa with seating for three, plus a lower and upper berth for sleeping. There is also space for wheelchair storage. The toilet and combined shower are in a private annex to the room and are wheelchair accessible. There are attendant call buttons in the bedroom and the restroom.
Amtrak trains can accommodate most wheelchairs in use today, provided they meet the ADA definition of a "common" wheelchair--up to 30 inches wide by 48 inches high, both manual and powered. If you wish, you can remain in your wheelchair enroute. If you choose to transfer to a seat, powered chairs can be checked as baggage and manual chairs can be stowed in the car or as baggage. If you don't need your wheelchair while on the train, Amtrak's baggage service will accept both manual and powered wheelchairs.
Meal Service - Meal service is available to all travelers with disabilities. You can order from
the menu and have your meal served to you in your room, at your seat or, if you make arrangements to transfer to and from the lounge car at appropriate station stops, in the lounge car. If you are traveling in a sleeping accommodation, your meals are provided as part of the cost of your travel.
Canine Companions - Trained service animals are allowed in all customer areas in stations, trains, and Amtrak Thruway motorcoaches free of charge. If the train schedule permits, Amtrak will allow time to walk your service animal at station stops provided that you stay within reasonable proximity to the train and reboard promptly. You should notify the conductor when you first board the train if you will need to walk your animal.
The Greyhound Lines not only has the most extensive routes but also the best program to accommodate the needs of travelers with disabilities.
Before Your Trip - To help Greyhound arrange for the assistance you need, you should contact Greyhound Lines' Customers With Disabilities Assist Line at 800-752-4841 at least 48 hours prior to departure.
Personal Care Attendants - If you require a personal care attendant (PCA) to travel with you, that attendant may be allowed to travel at no additional charge. A ticket will be issued to the PCA only at the time of travel. PCA tickets are one-way only. Customers requiring a return ticket for their PCA must request one at the departure location on the day of travel.
If an adult PCA is traveling at no additional charge with a minor that has a disability, the minor will be charged a full adult fare.
Service Animals - If you travel with a service animal, such as those provided by Canine Companions for Independence, it may travel with you. It must ride in the coach within your "space" and may not sit or stand in the aisle of the coach, nor occupy a seat.
Priority Seating - For people with disabilities, the front seats on either side of the coach are designated as "priority" seating. If these seats are taken, the bus driver, upon request, will ask the seated customer to move to another seat. (If the request is refused, Greyhound personnel cannot displace the seated customer, however.) In this case, you will then be seated as close to the front as possible and moved forward as seats become available.
Crutches, Walkers, and Wheelchairs - These are allowed inside the coach when they can be safely stowed in the overhead passenger compartment. Wheelchairs will be checked as baggage and stowed in the baggage compartment. Under the federal baggage tariff, however, if your chair is damaged or lost, a maximum reimbursement of only $250.00 is allowed. (This is why you should insure your chair before traveling by any means.) If you travel with a powered chair, be sure to check first with the Customers With Disabilities Assist office at 800-752-4841 for size, weight, and other limitations.
Boarding and Deboarding Assistance - Greyhound has begun to add wheelchair lift equipped buses to its fleet. With 48-hours advance notice, where wheelchair lift buses are not available, alternative boarding assistance, such as the Scalamobil or Aislemaster, will be provided. As a last resort, if you don't weigh more than 220 pounds, you can be lifted manually by Greyhound personnel using the two-person fireman's lift technique.
Accessibility - Some cruise ships are fully accessible to those who use wheelchairs. They have spacious, accessible cabins with bathrooms that include grab rails, roll-in showers, fold-down shower seats, hand-held shower heads and ample turnaround space for wheelchairs. They have elevators and ramps for getting around the ship. Some have accessible rooms but other areas of the ship aren't accessible. Some ships aren't accessible at all. The best practice when making cruise arrangements is to deal with one of the many travel companies that specialize in dealing with people with disabilities. I would feel pretty comfortable accepting advice from an agent who uses a wheelchair and who has actually cruised on the ship being considered, for example.
If you are the cautious type, you'll want to check very specifically with your travel agent or the cruise ship line itself to determine the availability of all your accessibility needs. For you, the following checklist may be useful:
Dialysis Cruises - Several cruise companies provide dialysis equipment and qualified medical personnel on their ships. See http://www.globaldialysis.com/tours.asp for more information.
The Cruise Lines International Association Web site at http://www.cruising.org has a handy search feature that allows you to locate ships that have the accessibility features you need. Click on the menu item, "Special Interest Guides to Cruising" and then on "Cruise Guide for Wheelchair Travelers."
Hotels and Motels
Accessible Rooms - Most modern hotels and motels will advertise that they have "accessible" rooms, and many do. But because too many of these firms have relied on lawyers to tell them what room modifications are "legal" instead of asking people with disabilities to advise them what room modifications are really necessary, many "accessible" rooms simply are not. One traveler tells of having a bathroom with a roll-in shower, but she couldn't enter the bathroom because the door was 25-inches wide instead of the 32 inches specified by the ADA. At the Amputee Coalition annual meeting in Chicago, I recall a friend who couldn't enter her bathroom in her wheelchair because the door swung the wrong way. I ended up borrowing a screwdriver and removing the door from its hinges because another room wasn't available.
When making your reservation, always talk directly to the people at the hotel at which you want to stay. The people at central reservations services simply don't have the answers to the questions you need to ask. The telephone numbers at the end of this section will connect you to central reservation services. You should be able to get the local telephone numbers from these people.
When contacting the hotel tell them that you need to talk to someone who can give you some details about their rooms equipped for guests with disabilities. When you get someone on the line the first question to ask is, "Have you been in these rooms?" If the answer is no, ask to speak to someone who has. Avoid questions that can be answered with a yes or no. For example, instead of asking do you have roll-in showers, ask them to tell you about the bathrooms.
If you have trouble getting the information you need, ask to speak with the head of engineering. These people may have been involved in the design and construction of the accessible rooms and may know a great deal about them. Another good source of accurate information is the head of housekeeping. If all else fails ask for the general manager.
Never assume anything. You may find that your room is accessible but you could still be surprised to find that elsewhere in the hotel there are steps without ramps that inhibit your movement into the restaurant, for example, or even into the hotel itself. If you plan to utilize the hotel's shuttle from the airport, be sure to ask about its accessibility.
Also, you may want to reserve a room on as low a floor as possible. In an emergency, elevators are often turned off and you will have to walk down or be carried down the stairs.
Once you determine that the hotel will suit your needs, you can reserve the room. When you arrive at the hotel, however, require them to show the room to you before you check in. At least this prevents bad surprises and the potential for having to change rooms later.
The worst case is that you find that the room you reserved is not accessible after all or that you are told that the accessible room you reserved isn't available. Remember, this isn't your problem, it's the hotel's, and you have a right to expect that the hotel will resolve it in your favor by finding you an acceptable room, either there or at another property. First, ask what they are going to do about it. If the answer you receive from the desk clerk isn't satisfactory, ask to speak to the manager. Be politely insistent (see Complaining and Asserting Your Rights at the end of this article), keep your cool, and the situation will generally be resolved to your satisfaction.
Small Hotels and Bed & Breakfast Accommodations - The ADA doesn't apply to lodging units that have less than ten rooms so you will want to inquire before you reserve a room at these kinds of locations.
Shower Seats - Some hotels may be able to furnish shower seats but don't count on it. The best practice is to purchase a folding seat to take along.
Central Reservation Service Telephone Numbers
|(Clarion, Quality, Comfort, Sleep, Roadway, Econo Lodge, and Friendship numbers are the same)|
|La Quinta Inn||800-531-5900|
Most major auto rental agencies located at large airports can provide autos with hand controls, provided that at least 24 hours' notice is given. Left-foot accelerator extensions may be available. Hand control extensions will probably not be available but you should be able to request a spinner knob to be attached to the steering wheel.
Since none of this will be automatic, the safest thing to do is to call (or have your travel agent call) the rental desk at the actual location you will be picking the car up (instead of making your reservation by computer or through the company's central reservation service) and discuss your specific needs with them.
If you use a wheelchair, you may be happier renting a two-door model. Two-door models usually have larger doors, providing extra space get the chair in and out of the back seat and to transfer in and out of the car.
If you want to learn more in general about what the major companies offer, here are telephone numbers you can call. Remember, however, that these will connect you to central reservation services. You will still want to contact the actual location where you plan to pick up your car.
There are several companies that rent vans with wheelchair lifts at major cities. A number of these companies are listed at: http://mossresourcenet.org/vans.htm
At present, there are no governmental requirements for taxis to be wheelchair accessible, nor is there an adequate listing of where accessible taxis are available in this country. This leaves the traveler on his or her own to find suitable inner-city transportation. The concierge employees at hotels may be of assistance here.
Specialized Travel Agencies
Although almost any good travel agency can help you make transportation and lodging arrangements within the U. S. (especially if you're prepared to help, using the information provided in this article), using a travel agency that specializes in serving people with disabilities is especially recommended for foreign travel and for tours. Here is a list of some of them.
Carefree, AZ 85377
135 Garfield Place, Suite 543
Cincinnati, OH 45202
800-717-U-CAN, or fax (513) 579-1554
35 West Sellers Ave.
Ridley Park, PA 19078
Easy Access Travel
5386 Arlington Avenue
Riverside, CA 92504
1-800-920-8989 or 909-372-9595
Flying Wheels Travel
143 Bridge St., P.O. Box 382
Owatonna, MN 55060
1-800-535-6790 or 507-451-5005
Access Aloha Travel
414 Kuwili St.
Honolulu, HI 96817
1-800-480-1143 or 808-521-2339
For information about companies specializing in arranging for travel in specific regions, contact the Amputee Coalition and ask for a copy of Carol Driscoll's article in Volume 6, No 2, (April/May 1996) of inMotion.
More agencies are listed at http://mossresourcenet.org/agencies.htm
Additional Information about accessible travel is located at http://www.access-able.com
Good general travel information for people with disabilities can be found at http://www.icanonline.net/channels/travel/transportation/air_travel.cfm
Free National Park Access
People who are disabled permanently can obtain a Golden Access Passport, which is a free lifetime entrance pass to all U.S. national parks. To obtain this passport, go to any National Park Service facility that charges an entrance fee and show proof of disability. The Passport admits the passholder and any accompanying passengers in a private vehicle. Where entry is not by private vehicle, the Passport admits the passholder, spouse, children, and parents. The Passport also provides a 50% discount on federal use fees charged for facilities and services such as fees for camping, swimming, parking, boat launching, and cave tours.
Complaining and Asserting Your Rights
U. S Department of Transportation - The Air Carrier Access Act prohibits discrimination on the basis of handicap in air travel and requires air carriers to accommodate the needs of passengers with disabilities. In 1990 The U. S. Department of Transportation issued a rule defining the rights of passengers and the obligations of air carriers under this law. You should consider carrying a copy of this document with you. It will be very helpful should you need to lodge a complaint. A summary of the main points of this rule (Title 14 CFR, Part 382).is available at: http://www.dot.gov/ost/ogc/subject/consumer/aviation/publications/disabled.html
The U. S Department of Transportation, Aviation Consumer Protection Division (ACPD), operates a complaint handling system for consumers who experience air travel service problems. You may call the ACPD 24 hours each day at 202-366-2220 to record your service complaint. If you write, your letter will be reviewed and, in most cases, will be forwarded to an airline official for further consideration. The mailing address is:
Aviation Consumer Protection Division
U.S. Department of Transportation
Room 4107, C-75
Washington, DC 20590
For further information, consult: http://www.dot.gov/ost/ogc/subject/consumer/aviation/service/index.html
Airport Accessibility - An airport that receives Federal financial assistance is subject to Section 504 of the Rehabilitation Act of 1973, as amended, and the DOT's implementing regulation 49 CFR Part 27. An airport that is owned by a public entity, such as a state or local government, is subject to Department of Justice (DOJ) regulation 28 CFR Part 35, implementing Title II of the Americans with Disabilities Act (ADA) of 1990. This regulation applies regardless of whether the airport is a recipient of Federal financial assistance. Specific portions of 49 CFR Part 37, including Sections 37.33(a) and (b), also apply to such an airport if it operates a designated or fixed route transportation system. 49 CFR Parts 37 and 38 are the DOT's regulations implementing Title II of the ADA.
Any person who believes that there has been violation of one of these regulations may file a complaint with the following office.
Federal Aviation Administration
Office of Civil Rights (ACR-4)
800 Independence Avenue, S.W.
Washington, D.C. 20591
Complaint Resolution at Airports - Every air carrier is required to have at least one Complaints Resolution Official (CRO) available at each airport during times of scheduled carrier operations. Passenger with complaints of alleged violations of the Air Carrier Access rules are entitled to communicate it to the CRO, who has authority to resolve complaints on behalf of the carrier.
Complaining in General - To help you obtain the treatment and services you deserve, you need to develop an assertive attitude. Please understand, an assertive attitude is not an antagonistic one. Assertiveness isn't anger. It doesn't require you to yell and scream. Assertiveness is a simple, calm insistence that your needs be met. Yelling and screaming can make an embarrassing scene and alienate the person to whom you are complaining. He or she is much more likely to respond positively to your complaint if you are calm, clear, and insistent. A calm, insistent voice can be more powerful than yelling and screaming, even though that's probably what you feel like doing.
Broken Record - You will hear a lot of excuses for why they can't do what you want them to. "It's because of the computer." "It's the rules." "It's just not possible." Listen respectfully to the excuses for a reasonable time, then begin to say what you want over and over again. It's called "broken record" and it works amazingly well if you keep your cool and keep it up.
"Well, the flight is full and there's nothing I can do about it."
"What can you do for me, Ms. Smith?"(Always address them by name.)
"I could do (this or that)."
"I understand, Ms. Smith, but that's not good enough. I want you to . . . . "
"This is a busy Friday and I just can't do it."
"I respect your problem, Ms. Smith, but I want you to . . . . "
"There are a lot of other people waiting also."
"I hear you, Ms. Smith, but I want you to . . . . "
. . . . and so on.
Up the Organization - There will probably come a time when the person you are complaining to says, "I don't have the authority to do that." This is the time to move up the organization. Ask to speak to the supervisor. Use broken record again. If that person cops out by stating he or she doesn't have the authority to grant your request, ask to speak to the manager. Use broken record again. If you run out of passenger representatives to speak to, ask to see the airline Complaints Resolution Official.
These processes take time--maybe time you don't feel you have--and they will be a drain on your energy and patience. So always keep your ears tuned for a compromise you can live with. Let's face it. We don't always get what we want. But if we complain and ask for what we want in an appropriate way, we are more likely than not to arrive at a solution we can live with.
Amputee Coalition News and Views
Reaching Out Through Partnerships
by Becky Bruce
The Amputee Coalition has embarked on an aggressive outreach campaign designed to reach individuals who may not be aware of the services Amputee Coalition's provides, in terms of its programs and resources that support those with limb loss. A complete listing of the organizations the Amputee Coalition is actively working with is presented below.
As examples, the Amputee Coalition has established active partnerships with the American Heart Association, the American Diabetes Association, and the American Cancer Society. By establishing partnerships with disease-related voluntary health associations such as these, the Amputee Coalition hopes to connect with individuals who have experienced limb loss due to cancer, diabetes and vascular disease.
When Amputee Coalition representatives met with these three organizations to discuss partnering, they found that these groups were extremely interested to learn more about the Coalition and the services it provides. On the flip side, we were also able to learn about their programs and thus will be able to provide information about these voluntary organizations to our own members who could benefit from their services and support. It's a mutually beneficial relationship; we can link you to them, they can link their members to us! An agreement was reached to partner in other ways as well, including writing articles in each other's journals and magazines, linking to each other's Web sites, and providing toll free numbers for other related resource hotlines.
Other focus groups for partnerships include the Disabled American Veterans, the American Podiatric Medical Association, and other organizations who focus on improving health outcomes for racial and ethnic groups. This is important because Hispanics and African Americans are twice as likely to have an amputation than whites, and certain tribal groups, such as the Pima Indians, are at four times the risk.
Lastly, the Amputee Coalition will be partnering with children's health and education groups to enhance awareness and understanding of the special needs of children and young adults with limb loss. By creating partnerships and building bridges to these communities, the Amputee Coalition will enable more families to have access to knowledge, resources, networking opportunities and be given the tools to help attain a positive future.
Strategic Partnerships Enable Amputee Coalition To:
Summary of Partnership Activities
Over the past six months, the Amputee Coalition has met with approximately 20 voluntary health associations, disability groups, service providers, and federal agencies in an effort to extend the reach and mission of Amputee Coalition's National Limb Loss Information Center. In each case, the Amputee Coalition is well on the way to building new bridges and agreeing on cooperative strategies to work together with these groups in many ways, including disseminating information, attending each other's national conferences, and working in coalitions toward the attainment of mutual goals.
Following are the groups Amputee Coalition has met with and with which the Amputee Coalition is developing collaborative efforts:
Voluntary Health Associations
American Heart Association
American Diabetes Association
American Cancer Society
Racial and Ethnic Populations
National Medical Association
National Black Women's Health Project
National Association for the Advancement of Colored People
100 Black Men
National Council of La Raza
Indian Health Service
Health and Disability-Related Federal Agencies and Organizations
CDC's Diabetes Control Programs
National Institute of Diabetes
Digestive and Kidney Diseases
National Institute for Disability, Rehabilitation Research
Independent Living Centers
Veterans Health Administration
Christopher Reeve Paralysis Foundation
Disabled American Veterans
.Provider Groups and Organizations
American Podiatric Medical Association
American Association of Diabetes Educators
American Association of Orthotics and Prosthetics
In the coming fiscal year, the Amputee Coalition plans to continue to develop its existing partnerships and, further, to explore partnerships with at least ten new organizations, including racial and ethnic minority groups, children's organizations, rehabilitation hospitals and other facilities serving people with disabilities, and select provider groups.
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Send address changes and membership requests to the Amputee Coalition, 900 East Hill Avenue, Suite 205, Knoxville, TN 37915-2566. Amputee Coalition membership is $25 per year for individuals and $75 per year for Support Group Membership. The opinions and editorial viewpoints expressed in the Communicator are those of the authors and do not necessarily reflect those of the Amputee Coalition. This publication is partially supported by Grant No. US59/CCU41-4287-03 from the Centers for Disease Control & Prevention (CDC). Its contents do not necessarily represent the official views of the CDC. ©2000 by Amputee Coalition; all rights reserved. Articles may be reprinted with proper acknowledgements unless otherwise specified by author.