2. WHEELS. This requirement gave me the least problem. It was pretty straight-forward. I googled "accessible van rentals." I chose a couple of sites, just to check the rates and how they operated. You get to reserve on their online form and they get back to you. I chose one of them (wheeler's) because it offered a cheaper rate: $110/day. I got to talk to their CA reservation office and all documents I needed were emailed to me. I faxed back the documents which included the standard reservation form, a copy of my driver license, and credit card authorization. All in all, I paid $691 for 5 days of use.
Recognize that the accessible van rental market is merely a portion of the national fleets such as Avis. This means that a plethora of options is not a reality. I asked for GPS, but the one I got did not have it. It had the my minimum requirements but I didn't like the lap restraint. The vehicle had a four point restraint but the lap restraint did not have a strap across the chest. Everything else - ramp deployment, "kneeling" function - was standard.
Pick-up directions and drop-off at the airport. The directions are included in the documents emailed to me so I left Britt with Tom and our party to pick up the van. I got into the shuttle that brought me to the parking area. This is a communal pick-up place for other rentals and businesses needing a place to return and pick-up and share personnel that did minimal documentation input into their computer. I checked the ramp deployment and restraints, swept a cursory look at the condition of the van, called in the info they needed (fuel level, mileage, license number), and took off back to the baggage claim area.
Drop-off is even easier (or so I thought). After filling up the tank, I drove back to where I picked up the van at the appointed time and gave the keys to a gentleman who recognized the van and waved me to a line of vehicles being cleaned by another. He got into the van and offered Tom and me a ride back to the airport but we declined as the shuttle was already leaving. In hindsight, I wish I didn't give the van away without checking the man's credentials. I didn't for two reasons: I was late 10 minutes in delivering the vehicle (I got lost: this parking place had two locations. Of course, I went to the wrong one, so Tom had to get out and ask directions to the right one.) ; and secondly, because I was late, a gentleman had called my cell to ask where I was. That's why I was confident that the gentleman who looked like he was expecting me got the van. Now that I am little bit more akamai, I would suggest making sure the person you are returning the van to is the right one. The pick-up/drop-off transaction is so informally conducted, it is open to ambush. To date, I have received no unexpected correspondence, so I think I am in the clear. Hopefully, dear God.
To be continued.....
Saturday, May 30, 2009
Wednesday, May 27, 2009
Cont'd: Making the Impossible Possible...
B. The Sine qua non - airplane, wheels, housing.
1. AIRPLANE: Economy or First class? was NOT a question. The fares for Britt, me and his student assistant were already more than a thousand bucks. No way would I pay more. I was sort of hoping that Delta (the cheapest online that I could buy) would be as sweet as JAL was the time we went to Japan: no questions asked, they upgraded me and Britt to business class. But the Delta flights both ways were fully booked, so that was that. We were a large party of seven traveling: Britt; myself; a student assistant who will help mainly with lip-reading; one of two graduate students who wanted to meet the demi-gods of ethnomethodology that Britt was going to see; and my two tweenaged nieces.
Know way ahead how the carrier handles people with special travel needs. Check the carrier website. I first pored through Delta's on disabled travelers. Airlines that outsource reservation function to call centers should rethink this strategy. I am not being discriminatory but there is something about the resulting frustration when the common language, English, is not spoken clearly. It was embarrassing how many times I had to have the guy on the other end to repeat himself. And he was sooooo sweet, too. He would put me on hold to refer to his supervisor. With the music on, you know he is still online but he would come back to me every 2-3 minutes and ask if I could hold for 2-3 minutes more. I call that consideration but I did need somebody whom I could understand without several repeats.
Unquestionably, transporting a man in a wheelchair whose only gross movement involved a shaking of the head is a special need. I needed the airline to understand that Britt needed to be in his own wheelchair all the way to the boarding area; that although I had others traveling with us, we were not in a position to transfer him to his airplane seat without assistance, mechanical or human; that Britt needed special handling with some quick understanding of his disabilities and respectful of his condition as well as his dignity. I described to several reservation agents what Britt's situation was. I even emailed them directly. I wanted them to know that "this man is long, not heavy. But he is dead weight - he cannot help at all." I had seen the dreadful aisle chair - a device that is nothing more than a slightly reconfigured hand cart- that they said would be used to take him from the outside of the plane to his seat. If airline carriers are serious in assisting disabled passengers, the aisle chair is one of the things that need to be improved to provide safety as well as allow dignified handling of the disabled.
To address this concern, I tried to convince them that I could purchase a portable lift that can be stored in the cabin after using it to transfer Britt to the airplane seat. I argued that a portable Advance Hoyer lift (http://www.phc-online.com/v/vspfiles/html/lift_hoy_advance.shtml) may do the job better than we could ever do with the aisle chair or human strength. However, the agent said the airline will not allow this device, for which reason I could not understand. Still, someone may yet test my theory.
Two hours before flight time? Make that three! Disabled travelers appear to be an uncommon occurrence at ticket counters that many counter personnel may be very unfamiliar with the procedures of checking them in. The ones who checked us in both airports needed assistance from supervisors/senior personnel, in person and by phone. I pointed out that we are entitled to one free luggage which contained three of Britt's machines: compressor, tabletop suction machine and chest percussor. One other box contained most of his other care needs (suction catheters, wash basin, etc.) but I believe this does not qualify for free, although, looking back, I should have asked for sure. There will be delays at the ticket counter because of the situation so make sure there is ample time to check and recheck - for you and the counter people.
I can't tell now whether talking to the airline agents multiple times several weeks before about Britt's transfer made any difference. Describing his condition and asking specifically for strong, tall people to be on hand to help did not translate into reality. Two potbellied small Filipinos at the HNL airport were assigned to assist us. I ended up making the manual transfer myself (thanks to adrenalin, obviously) because their self-doubt increased my own about their ability to make a safe transfer. It was a risk I took but I thought I was a better risk. I think what made a difference was the fact that they actually SAW Britt and the Filipino Skycaps probably reported to their supervisors about the passenger Robillard because when we arrived at LAX and in returning at HNL, we had more reassuring assistance.
Airport security. This website will help in preparing you for the security procedures you have to go through: http://www.tsa.gov/travelers/airtravel/specialneeds/index.shtm. Letting the airline know ahead of time, at least 48 hours before travel, of your need for assistance will allow them to work with you regarding your needs. We had no trouble with airport security at both airports. They were helpful and respectful - their questions pertinent and straightforward. I told them Britt couldn't communicate the familiar way, so the Skycap assistant pushing his wheelchair helped in putting Britt's and my stuff on the conveyor belt so I could be with him while the security officer was patting him down. The only trouble I had was with the urinal which Britt had just used. I had warned the security lady about the urinal being with fluid but there was still spillage. Having learned my lesson, coming back I made sure I emptied the urinal before we went to security!
On to boarding area!
Ask for ways to make you more comfortable, including upgrades. Britt and I needed more space for different reasons. Booking etickets particularly through ticket brokers such as Travelocity restricts your choice of seats to what is made available by the carrier to that particular agent. At the boarding area, they gave us the seats behind the bulkhead right after their business class section where there was more legroom. It allowed Britt to stretch his long legs and for me room to reposition him during the 5 hour flight.
Don't forget the inflatable head pillow! To my consternation, I did. Consequently, for most of the flight, I had to make my right brain work overtime trying to create one with tiny blue blankets and my biceps, holding Britt's head up.
To be continued....
1. AIRPLANE: Economy or First class? was NOT a question. The fares for Britt, me and his student assistant were already more than a thousand bucks. No way would I pay more. I was sort of hoping that Delta (the cheapest online that I could buy) would be as sweet as JAL was the time we went to Japan: no questions asked, they upgraded me and Britt to business class. But the Delta flights both ways were fully booked, so that was that. We were a large party of seven traveling: Britt; myself; a student assistant who will help mainly with lip-reading; one of two graduate students who wanted to meet the demi-gods of ethnomethodology that Britt was going to see; and my two tweenaged nieces.
Know way ahead how the carrier handles people with special travel needs. Check the carrier website. I first pored through Delta's on disabled travelers. Airlines that outsource reservation function to call centers should rethink this strategy. I am not being discriminatory but there is something about the resulting frustration when the common language, English, is not spoken clearly. It was embarrassing how many times I had to have the guy on the other end to repeat himself. And he was sooooo sweet, too. He would put me on hold to refer to his supervisor. With the music on, you know he is still online but he would come back to me every 2-3 minutes and ask if I could hold for 2-3 minutes more. I call that consideration but I did need somebody whom I could understand without several repeats.
Unquestionably, transporting a man in a wheelchair whose only gross movement involved a shaking of the head is a special need. I needed the airline to understand that Britt needed to be in his own wheelchair all the way to the boarding area; that although I had others traveling with us, we were not in a position to transfer him to his airplane seat without assistance, mechanical or human; that Britt needed special handling with some quick understanding of his disabilities and respectful of his condition as well as his dignity. I described to several reservation agents what Britt's situation was. I even emailed them directly. I wanted them to know that "this man is long, not heavy. But he is dead weight - he cannot help at all." I had seen the dreadful aisle chair - a device that is nothing more than a slightly reconfigured hand cart- that they said would be used to take him from the outside of the plane to his seat. If airline carriers are serious in assisting disabled passengers, the aisle chair is one of the things that need to be improved to provide safety as well as allow dignified handling of the disabled.
To address this concern, I tried to convince them that I could purchase a portable lift that can be stored in the cabin after using it to transfer Britt to the airplane seat. I argued that a portable Advance Hoyer lift (http://www.phc-online.com/v/vspfiles/html/lift_hoy_advance.shtml) may do the job better than we could ever do with the aisle chair or human strength. However, the agent said the airline will not allow this device, for which reason I could not understand. Still, someone may yet test my theory.
Two hours before flight time? Make that three! Disabled travelers appear to be an uncommon occurrence at ticket counters that many counter personnel may be very unfamiliar with the procedures of checking them in. The ones who checked us in both airports needed assistance from supervisors/senior personnel, in person and by phone. I pointed out that we are entitled to one free luggage which contained three of Britt's machines: compressor, tabletop suction machine and chest percussor. One other box contained most of his other care needs (suction catheters, wash basin, etc.) but I believe this does not qualify for free, although, looking back, I should have asked for sure. There will be delays at the ticket counter because of the situation so make sure there is ample time to check and recheck - for you and the counter people.
I can't tell now whether talking to the airline agents multiple times several weeks before about Britt's transfer made any difference. Describing his condition and asking specifically for strong, tall people to be on hand to help did not translate into reality. Two potbellied small Filipinos at the HNL airport were assigned to assist us. I ended up making the manual transfer myself (thanks to adrenalin, obviously) because their self-doubt increased my own about their ability to make a safe transfer. It was a risk I took but I thought I was a better risk. I think what made a difference was the fact that they actually SAW Britt and the Filipino Skycaps probably reported to their supervisors about the passenger Robillard because when we arrived at LAX and in returning at HNL, we had more reassuring assistance.
Airport security. This website will help in preparing you for the security procedures you have to go through: http://www.tsa.gov/travelers/airtravel/specialneeds/index.shtm. Letting the airline know ahead of time, at least 48 hours before travel, of your need for assistance will allow them to work with you regarding your needs. We had no trouble with airport security at both airports. They were helpful and respectful - their questions pertinent and straightforward. I told them Britt couldn't communicate the familiar way, so the Skycap assistant pushing his wheelchair helped in putting Britt's and my stuff on the conveyor belt so I could be with him while the security officer was patting him down. The only trouble I had was with the urinal which Britt had just used. I had warned the security lady about the urinal being with fluid but there was still spillage. Having learned my lesson, coming back I made sure I emptied the urinal before we went to security!
On to boarding area!
Ask for ways to make you more comfortable, including upgrades. Britt and I needed more space for different reasons. Booking etickets particularly through ticket brokers such as Travelocity restricts your choice of seats to what is made available by the carrier to that particular agent. At the boarding area, they gave us the seats behind the bulkhead right after their business class section where there was more legroom. It allowed Britt to stretch his long legs and for me room to reposition him during the 5 hour flight.
Don't forget the inflatable head pillow! To my consternation, I did. Consequently, for most of the flight, I had to make my right brain work overtime trying to create one with tiny blue blankets and my biceps, holding Britt's head up.
To be continued....
Monday, May 25, 2009
Making the Impossible Possible: Traveling with a Severely Disabled Person – a Personal Case Study
I am making our recent trip to LA to witness our son’s graduation from college the case study for this post. This was my husband’s first trip to the mainland in 18 years. Having traveled with my husband off-island to Japan 12 years ago at the invitation of the Fukui ALS Association was helpful in anticipating the rigors AND fun of this experience. But this trip being personally motivated, financed and arranged, gave it a different flavor.
A year ago, the will to bring Britt to the mainland for Tom's graduation started as a timid, almost hollow promise to ourselves that we would go. It slowly assumed likelihood when the time drew nearer.
A. PLANNING AHEAD. In February, I started imagining step by step how I would bring Britt from the house to the airport to the boarding area, etc., etc.... and everything that each step would require.
What to bring. Although I had a mental checklist of the steps to take in preparation, I actually made a physical checklist of the things to bring. And even then, I STILL managed to forget some – flashlight with batteries, my in-flight reading material, among them. Thank God, all the essentials for his care were in my 2 ½ boxes! Bringing the generator nibbled at my mind but, nah, I said, maybe overkill.
Where to ask for help. Linda Dullin, our HMSA case manager, was an indispensable source of sage advice. She was the sounding board for my doubts and second guesses, particularly those relating to equipment I thought I needed to bring. Remember, this trip is self-financed so she helped me rethink the stuff I wanted to have vs. the stuff I had to have. She hooked me up with Apria for the rentals that I would need: lift, hospital bed, overbed table.
Jennifer Li-Dotson, our MDA Health Care Services coordinator referred me to Andi Sass, MDA Health Care Services Coordinator (Los Angeles) for a commode. I emailed Andi a picture of what we had at home and she got that in our rental house even before we arrived from Oahu! Talk about speed, efficiency, know-how, concern! Now, I can never look at a commode without thinking of Andi (thanks to her sense of humor, she took this as a compliment, which was my intention.)
Fig.1. Britt’s commode. I padded the cover of the seat because of the ridges that form the edge of the cover, which pose a danger to his fragile skin. Manufacturers should rethink this design. Notice the different “legs” of this commode. The original legs were too short so I took off the legs from his older one and switched them. I took these precious legs to LA with me, in case Andi’s loaner was a Danny de Vito!
Check important websites especially those regarding travel for the disabled. Because we were traveling at mid- spring, I was concerned about the kind of clothing I needed to bring for Britt. He tends to get cold very easily not having much bodily insulation from the muscle and fat loss. Of course, no matter what, Britt would be wearing his signature aloha shirt and shorts but I would need to know which sweaters and lap blankets to take along. (I have always wanted to buy him ponchos to wear instead of sweaters as the latter are hard to put on and actually creep up his torso as the day wears on, but that could be the subject of another blogpost.) I started monitoring
for 15-day forecasts and historical data. (Talk about obsessive-compulsive! I was NOT going to give up my sweater if it turned out to be a cold trip, as I have thin blood to begin with.) Fortunately, it was a sunny 5-day trip with nippy mid-50’s at night but minus the humidity that our skins and lungs were familiar with in balmy Hawaii. Having (many) relatives in LA meant we could borrow warm blankets as needed.
As for travel websites, the one that gave me the most information was http://www.globalaccessnews.com/tipsandresources.htm
It gave specific as well as general info and led to links (although some didn’t work) that could be explored further. It confirmed some of the misgivings I had, for example, about checking in wheelchairs (It lost a lever sponge cover. Minor, but still…) This site was worth the quick read I gave it. I also took a quick look at
http://www.faa.gov/acr/dat.htm and searched for “air travel for people with disabilities”. Interesting read. If you have the time and interest, this is a great site to peruse regarding rights of traveling people with disabilities.
(To be continued : The sine qua non– wheels, airlines, housing.)
A year ago, the will to bring Britt to the mainland for Tom's graduation started as a timid, almost hollow promise to ourselves that we would go. It slowly assumed likelihood when the time drew nearer.
A. PLANNING AHEAD. In February, I started imagining step by step how I would bring Britt from the house to the airport to the boarding area, etc., etc.... and everything that each step would require.
What to bring. Although I had a mental checklist of the steps to take in preparation, I actually made a physical checklist of the things to bring. And even then, I STILL managed to forget some – flashlight with batteries, my in-flight reading material, among them. Thank God, all the essentials for his care were in my 2 ½ boxes! Bringing the generator nibbled at my mind but, nah, I said, maybe overkill.
Where to ask for help. Linda Dullin, our HMSA case manager, was an indispensable source of sage advice. She was the sounding board for my doubts and second guesses, particularly those relating to equipment I thought I needed to bring. Remember, this trip is self-financed so she helped me rethink the stuff I wanted to have vs. the stuff I had to have. She hooked me up with Apria for the rentals that I would need: lift, hospital bed, overbed table.
Jennifer Li-Dotson, our MDA Health Care Services coordinator referred me to Andi Sass, MDA Health Care Services Coordinator (Los Angeles) for a commode. I emailed Andi a picture of what we had at home and she got that in our rental house even before we arrived from Oahu! Talk about speed, efficiency, know-how, concern! Now, I can never look at a commode without thinking of Andi (thanks to her sense of humor, she took this as a compliment, which was my intention.)
Fig.1. Britt’s commode. I padded the cover of the seat because of the ridges that form the edge of the cover, which pose a danger to his fragile skin. Manufacturers should rethink this design. Notice the different “legs” of this commode. The original legs were too short so I took off the legs from his older one and switched them. I took these precious legs to LA with me, in case Andi’s loaner was a Danny de Vito!
Check important websites especially those regarding travel for the disabled. Because we were traveling at mid- spring, I was concerned about the kind of clothing I needed to bring for Britt. He tends to get cold very easily not having much bodily insulation from the muscle and fat loss. Of course, no matter what, Britt would be wearing his signature aloha shirt and shorts but I would need to know which sweaters and lap blankets to take along. (I have always wanted to buy him ponchos to wear instead of sweaters as the latter are hard to put on and actually creep up his torso as the day wears on, but that could be the subject of another blogpost.) I started monitoring
for 15-day forecasts and historical data. (Talk about obsessive-compulsive! I was NOT going to give up my sweater if it turned out to be a cold trip, as I have thin blood to begin with.) Fortunately, it was a sunny 5-day trip with nippy mid-50’s at night but minus the humidity that our skins and lungs were familiar with in balmy Hawaii. Having (many) relatives in LA meant we could borrow warm blankets as needed.
As for travel websites, the one that gave me the most information was http://www.globalaccessnews.com/tipsandresources.htm
It gave specific as well as general info and led to links (although some didn’t work) that could be explored further. It confirmed some of the misgivings I had, for example, about checking in wheelchairs (It lost a lever sponge cover. Minor, but still…) This site was worth the quick read I gave it. I also took a quick look at
http://www.faa.gov/acr/dat.htm and searched for “air travel for people with disabilities”. Interesting read. If you have the time and interest, this is a great site to peruse regarding rights of traveling people with disabilities.
(To be continued : The sine qua non– wheels, airlines, housing.)
Wednesday, May 13, 2009
See You At The ALS Seminar This Saturday!
May is ALS Awareness month. This Saturday is the annual ALS seminar. There was a nice article in the Star Bulletin today on Chester, who was diagnosed with ALS last year. He reminds me of my Dad because of his laid back, local, accepting attitude. He's living life to its fullest, traveling as much as he can, knowing that this disease is terminal, but not letting it get him down. My dad was just like Chester. He really had a zest for life.
Each year, we lose people to ALS. As we lose some, more are diagnosed, and there is still no cure for this debilitating disease. Please help support Muscular Dystrophy Association (MDA) in its quest to, one day, find a cure.
» What: Ninth Annual ALS Seminar (ALS is amyotrophic lateral sclerosis, or Lou Gehrig's disease)
» When: Saturday, 9 a.m. to 12 noon
» Where: Queen's Conference Center, 510 Beretania St.
» Why: Sharing local resources for families, caregivers
» Speakers: Keynote -- Mike Shannon, ALS Western regional director; Kimi Chun (daughter-in-law of the late artist Peggy Chun) will share caregiving resources and different care options.
» Registration: Free. Call 593-4454.
» Sponsor: Muscular Dystrophy Association
We'll be there Saturday morning manning the ALS Support Group booth! Hope to see you there!
Each year, we lose people to ALS. As we lose some, more are diagnosed, and there is still no cure for this debilitating disease. Please help support Muscular Dystrophy Association (MDA) in its quest to, one day, find a cure.
» What: Ninth Annual ALS Seminar (ALS is amyotrophic lateral sclerosis, or Lou Gehrig's disease)
» When: Saturday, 9 a.m. to 12 noon
» Where: Queen's Conference Center, 510 Beretania St.
» Why: Sharing local resources for families, caregivers
» Speakers: Keynote -- Mike Shannon, ALS Western regional director; Kimi Chun (daughter-in-law of the late artist Peggy Chun) will share caregiving resources and different care options.
» Registration: Free. Call 593-4454.
» Sponsor: Muscular Dystrophy Association
We'll be there Saturday morning manning the ALS Support Group booth! Hope to see you there!
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