The Quest for Sleep

by Aimee Sterk, LMSW, MATP Staff

I first wrote this piece in 2013 and have dug it up to share again in honor of my respiratory therapist, David Gritter, retiring. He actually retired in May, but I was on maternity leave so I’m sharing this in my first post since returning. Dave is among a group of medical and helping professionals from a variety of disciplines that have come into my life and saved it. Because of him, I tried again to use devices to help me sleep. Because of him, I am no longer dangerously sleepy at the wheel. Because of him, I’m now an evangelist for sleep studies and have gotten at least one friend to go in (and find out she needed a CPAP too). Because of Dave, and my new sleep specialist physician Dr. Jason Coles, I am now using a BiPAP and I made it through four pregnancies, two losses, and IVF which all complicated my sleep. Because of them and their help and guidance, I get to partner with my husband to raise two beautiful kids and participate actively in the communities and work that I love.

Bipap
My trusty BiPAP and face mask which Dr Coles and Dave helped me get during my pregnancies when my air swallowing made my CPAP unusable for me. BiPAPs have two levels of pressure (lower pressure on the exhale) which helped make my air swallowing more manageable. I added the cardboard flap on the front to cover the bright light that comes on when you turn the machine on.

July 2013

I have been on a quest for good sleep for the better part of 8 years. I can remember having trouble sleeping even as a kid, but it didn’t affect my energy level during the day. As I age, the lack of energy is catching up with me. I sought help from a sleep specialist when my tiredness was affecting my ability to drive safely.

The first sleep specialist I saw didn’t believe my assertion that my hormonal problems (I have polycystic ovarian syndrome—PCOS) were related to my sleep. He discounted my feelings and my evidence and told me I needed a series of sleep studies and likely I was experiencing sleep problems as a result of clinical depression. I had clinical depression previously and knew I didn’t have it again. I didn’t appreciate the way he talked to me or his jump to diagnose or his statement that I needed many sleep studies for thousands of dollars to get to the bottom of this problem.  I didn’t make a follow up appointment.

I did some research on my own, switched up some of my medications, and had some relief for a while, then, I again had trouble driving safely. I looked for a new sleep specialist.

The next sleep specialist I saw listened to me, believed me, and convinced me to have a sleep study.

The sleep study showed I have upper airway resistance syndrome (UARS). While not sleep apnea, it can produce similar disturbances in sleep. The brain waves from my sleep study also confirmed that I was not clinically depressed at that time.

I began the journey for ways to resolve UARS. After trying bite splints, consults for surgical options, sleeping in new positions, and fancy pillows that didn’t work, my sleep specialist convinced me to try a CPAP again (continuous positive air pressure) device.

I had given up on a CPAP before after difficulties with swallowing air. A previous respiratory therapist was dismissive of my complaints and I simply gave up. I wasn’t excited to try again.  Just after a new respiratory therapist, Dave Gritter, came in the room, I burst into frustrated and defeated tears. I really didn’t believe this device would help me.

Dave was very patient and explained my sleep study to me in more detail, told me about research that showed CPAPs can be effective with UARS and also told me that new definitions of apnea were being developed and I did fit in the new definitions. He told me he truly believed that this device would work for me. He also explained that while some people notice a difference immediately, others take some time and/or don’t actually notice a difference until someone points out to them that they seem less tired. He encouraged me to try to rest and read while using the CPAP to get used to it and to take it off in the middle of the night if it was bothering me. He gave me a number to call if I had trouble.

I started out on a very low pressure to see if it would work without causing me to swallow air. I still had lots of problems swallowing air, but with reassurance from Dave, I kept using the CPAP. I didn’t like how it made me look—like a strange astronaut—and

Air mask
See?! Even the model looks like an astronaut (I’m still working on disability pride here, clearly), but this device and mask save my life every night.

was embarrassed to have to use it while staying at a friend’s house. My husband was supportive though. After 3 weeks, I noticed feeling much better during the day. I didn’t feel like I needed a nap and I no longer worried about falling asleep at the wheel. By two months in, I was using the CPAP all night and wrote a letter to Dave saying that the device was life changing.

Since that time, I have had ups and downs. I think they are related to hormone fluctuations and my other specialists have said that is something I have to live with.

While I wish I was well-rested and energetic all the time, as I was in the early months of using the CPAP, I’m still convinced that it helps me. I very rarely have trouble driving—a key sign to me that there is a problem. I used to have trouble driving every day.

I’m grateful for the journey I’ve been on. I knew myself, found health professionals that listened to me, believed me, and supported me to do what was best for me. I continue to look for ways to feel better but know that my disabilities present both gifts and barriers. I have learned a lot about good sleep habits, my own body, and how it functions, and the gifts of feistiness and noncompliance when dealing with health professionals who aren’t really on my team. I have found a piece of Assistive Technology that helps me do what I want to do—sleep.  It’s not perfect, but it’s a good start.

Did you know that untreated sleep apnea takes years off of your life and that driving while drowsy is just as dangerous as drunk driving?

How have you advocated for yourself in the medical community to get to professionals that have helped?

AT for Emergency Prep and Response: Overview of the Series

Damaged wheelchair in a flood damaged home in Illinois
A Damaged Power Chair in a Flood Damaged House

This is the first of a number of blog posts on keeping ourselves safe and enabling our return to normal when our lives are churned and overturned by emergencies and disasters.

Although hurricanes and wildfires in the border states have gotten the most press coverage, the Midwest, including Michigan, have their share of regional emergencies and disasters, including flooding, ice storms, wildfires, tornadoes, powerful thunderstorms, blizzards, and so on.

People with disabilities in Michigan share the same concerns for preparation and response that occur in those emergencies that receive more press coverage.

This post is an introduction to these issues. Future posts will cover the issues in more depth.

For our community, emergencies and disasters pose additional barriers and problems to getting ready for, robustly responding to, and ultimately recovering from, disaster:

  1. Preparing for disaster requires a different mindset and a much more serious focus for the disability community. I will use the metaphor of the GoKit to frame the issues of preparation for disasters in our community.
  2. Our community can’t count on our social networks to automatically have the requisite skills to support us during a disaster. We have to work to build in those skills (and the redundancy of those skills) so they are available during the disaster.
  3. Although Emergency Shelters have dramatically improved their accessibility and accommodation resources in recent years, we all know that these are general resources, not necessarily customized to our individual needs. We need to take steps to assure that we have what we need when we need it, wherever we might end up.
  4. Our community, more than most others, needs to think about the organizations and services that we use in our ordinary life and whether those same services are prepared to continue their support in a significant emergency.
  5. We must take responsibility for building emergency preparation and response into our personal networks as a normal topic for discussion and development among our friends and allies in the disability community,
  6. Over the longer term, we must assertively collaborate with emergency response services long before emergencies occur to build both an understanding of our community’s needs and to deepen our community’s understanding of the how and the why of emergency preparation in the regions where we live.

I hope that readers will consider sharing their experiences with significant emergencies, how they coped, and the lessons that they learned as these posts roll out.

Tiny Words on Thin Pages

A Demonstration and Short-Term Loan Story

Mark smiling while holding up the book reader machine

Mark served his community for years through his work as a substance abuse counselor, care worker for a residential facility, and mission work in a prison and drug rehabilitation center. His whole life he had been an avid reader of the bible. After losing a leg to diabetes as well as some of his vision, Mark began adapting to a new way of living. However, he was concerned he might not be able do to do all the things he used to do well anymore.

When Mark and his wife were referred to the Superior Alliance for Independent Living (SAIL)* in March 2018, assistive technology (AT) was completely new to them. Mark’s wife initially called for information on services available for them when they were referred to the accessibility specialist to learn about AT.

Mark identified reading as a new area of difficulty for him. He stated prior to his vision loss, he read the bible regularly and would like to continue to do so. SAIL staff member Emily demonstrated the Max Detail Viewing Glasses and the Talking Book Player, which Mark took a liking to both and thought they were “pretty cool.”

Mark brought out his bible, which had tiny print on thin pages. He put on the Max Detail Viewing Glasses and began to read aloud slowly, but with complete accuracy. He was not sure how long he could read this way but was smiling because the tiny words on thin pages were no longer so difficult.

Mark was still interested in the Talking Book Player, so he and Emily completed the application for the National Library Service. Aside from the bible, Mark was excited to learn about his options for talking books, and expressed interest in westerns and history. Mark took out the viewing glass on a short-term loan to compare the two devices. 

When the talking book player came in the mail, Mark stated he was able to operate it on his own and stopped using the glasses because he preferred listening to the tapes in his free time. His wife stated that it was good for Mark to find something to keep him busy when he is home by himself.

As small of a change it was, it has given Mark independence in a big way by giving him the chance to return to a sense of normality in his daily life.

*SAIL works with Michigan Assistive Technology Program (MATP) to provide AT services across Michigan’s Upper Peninsula. More information about Demonstration and Short-Term Loan Services.

Know Your Voting Rights

"Get Out the Vote" with the dynamic wheelchair accessibility symbolThe AutoMARK voting machine with headphones

 

The Michigan Primary Elections are taking place on August 7th and today is the final day to register to vote!  Candidates for Governor, U.S. Congress, and state Senate and House members are among the important decisions on the ballot.  If you haven’t registered already, you can still do so through the Secretary of State’s Voter Information Center.

Traditionally, people with disabilities as a group, have had a lower voter turnout rate than other groups.   According to the AAPD’s Voter Statistics and Data, the voter turnout rate of people with disabilities was 6 percentage points lower than that of people without disabilities during the 2016 election.  Does 6% make a big difference?  Would higher rates of voting among people with disabilities make a difference?   Absolutely!  if people with disabilities voted at the same rate as people without disabilities who have the same demographic characteristics, there would be about 2.2 million more voters!  It is important that our voices and choices are heard.

Part of the lower voter turnout rate may be due to a lack of information about your rights as a voter with a disability.  Let’s address some of the major rights.

  • Polling places must be accessible.  Federal and state laws require polling places to remove or make accommodations for any barriers that prevent voters with disabilities from voting. For example, doors should not be blocked, alternatives to stairs such as ramps or elevators should be available, and lighting and seating should be adequate.
  • At least one voting station should be adapted to allow a person to vote while seated. In addition, all voters, including voters with disabilities, have access to the AutoMARK Voter Assist Terminal.   The AutoMARK features a touch screen, a keypad marked with Braille, and the opportunity for voters to use their personal sip-puff device, a stylus or a footpad to mark their ballots. The AutoMARK is wheelchair-accessible and is equipped with headphones so that voters may hear the ballot read aloud to them if they wish.
  • ID is NOT required to vote.  If you do not have identification or did not bring your ID to vote, you can still vote by signing an affidavit confirming your identity.  Once signed to can cast your ballot.
  • You have the right to take someone with you to assist you to vote.  However, they cannot be your employer, your union representative, or a candidate. Poll workers can also help you vote, as long as there are two people representing at least two political parties.
  • You can request an absentee ballot if you need assistance getting to your polling place or need assistance casting your ballot.  To receive an absentee ballot you can contact your local county clerk or fill out an absentee ballot application online.
  • You can get help if your polling place is inaccessible or you experience difficulties voting.  On election day, several hotlines are available to receive help if barriers to voting arise.

Your voice is important on election day.  To find out what will be on the ballot, you can view a sample ballot, you can also verify that you are registered to vote and track the status of your absentee ballot through the Secretary of State Voter Search.  Want Bipartisan information about the candidates and issues on your ballot?  Vote411 allows you to enter your address and receive personalized information about the candidates on your ballot.  Become one of the 2.2 million additional voters to impact elections.  VOTE!

AT for Frozen Treats in the Summer Heat!

Up close picture of a waffle cone holding ice cream.

By Jen Mullins, BS, CTRS, MATP Staff

The weather where I live in lower Michigan has been fairly hot lately (or at least, hotter than I would like!)  Frozen treats seem to help with cooling down, but sometimes aren’t the easiest to access. Typical ice cream scoops require a good amount of upper body strength, cold temperature tolerance in hands, hand strength & grip, and muscle endurance.  For someone who has a disability that impacts any of these areas, scooping hard, dense, frozen cream/sorbet/gelato/custard with a traditional scoop is not always possible. Thankfully, there are some great Assistive Technology supports available!  

Photo of a person using the Ice Cream Scoop & Stack in a carton of frozen ice cream. The device is then shown putting ice cream onto a cone.#1: The Ice Cream Scoop & Stack cuts slices of ice cream (instead of scoops): “Push the Ice Cream Scoop & Stack into firm ice cream.  The beveled front edge of the scoop makes it easy to cut through even the hardest ice cream. Twist just a bit and then lift. Press the button on the top of the Ice Cream Scoop & Stack to release the ice cream.”  No traditional scooping needed!

Oxo Good Grips I-Series Ice Cream Scoop#2: “Beaked” ice cream scoops like the Oxo Good Grips I-Series offer a more precise solution: the large, aluminum beak of this ice cream scoop breaks into hard ice cream and the ejector or trigger button on the scoop handle helps to get the ice cream out of the scoop.  I like that this scoop also has Oxo’s usual non slip coating; making it easier for my dry-skinned-hands to grip it while I’m scooping.

Zeroll ice cream scoops and spades, shown holding scoops of ice cream#3: Heated-conducting scoops & spades like ones from Zeroll have heat conductive fluid sealed within the handle.  The scoop or spade uses the heat from the user’s hand to warm the fluid in the handle which transfers to the scoop and glides thru the frozen ice cream with less resistance.  Something to note about this scoop is that it needs to be hand washed and can’t go in the dishwasher.

Graphic of an empty muffin panA low tech AT idea for scoops is to use a muffin tin.  Let ice cream soften for a while and then scoop soft ice cream scoops into muffin tins (lined with plastic wrap) & refreeze. When you want a scoop, it’s ready and waiting without having to fight with the chilled cream.

Oven mitt with grippy dots on the surfaceA piece of nonslip drawer liner or a silicone baking mat can be helpful when placed under an ice cream carton.  The liner or mat will do a better job of keeping the container stable while you scoop than a smooth counter surface. And, if the carton is too cold to touch with your non-scooping hand, consider sliding on a grippy oven mitt to better hold the container while you scoop.  You can put the other grippy mitt on as well to help better hold the scooper.

Home ice cream makers can also be great AT for frozen treats as they allow you to decide which ingredients to include to meet your specific dietary requirements.  I also like homemade ice cream because right after it’s done churning, its consistency is like soft serve and it can be “scooped” and enjoyed without the need for brute scoop force!  In a previous blog post, I shared about how I use my Kitchenaid stand mixer as one of my AT supports in the kitchen and it’s worth noting that Kitchenaid does have an ice cream maker attachment for their stand mixers.  A few years ago my sister gifted me the ice cream maker attachment and I’ve really enjoyed using it (plus, it takes up less space than a whole, separate ice cream machine).

Strawberry popsicleFor treats that you can enjoy straight out of the freezer like ice pops, Popsicles, Drumsticks, or my favorite: fudgesicles, there’s also AT that can help with holding, gripping, and cold temperature tolerance:

DripStiks holding a popsicle and an ice cream coneA DripStik can make a small treat handle larger/easier to hold while catching melty drips and can be used to hold larger treats like ice cream cones!  Bonus: you can easily set down your treat when it’s in a DripStik. 

Ice pop sleeves provide a layer of material between the frozen treat and your skin so it’s easier to hold & grip.  Bonus: they are reusable & insulated so they keep the treats colder!  If someone needs a thicker sleeve, duct tape can come to the rescue: position the sleeve on a frozen ice pop and gently wrap the tape around the sleeve until it’s at the desired thickness.  Be careful not to tape so tightly that the sleeve won’t come off of the pop.  

Ice pop sleeves, person holding a sleeve on an ice pop

If you’re  looking for AT supports for your whole bbq or picnic (and not just for dessert), check out our archived webinar: AT for Your Accessible Picnic.

I hope this information helps you stay cool (& frosty!) during this summer season! 😉  Do you use any AT supports for enjoying frozen treats or during a picnic? Comment below; I’d love to learn about them!

Two hands holding two chocolate popsickles together

Don’t Fail that Fall

by Aimee Sterk

Did you know that one out of three adults age 65 and older fall each year?

Disability.gov had such a great post about falls prevention, and safety, we wanted to share it here.

Falls are the number one cause of fractures, hospital admissions for trauma, loss of independence and injury or deaths for seniors. But you can take action! Learn how to prevent falls outdoors and at home or take a falls risk self-assessment. Visit the website of the Fall Prevention Center of Excellence to find information to keep you and your loved ones safe from falls. The site has resources for older adults and caregivers, including the three main strategies of fall prevention: balance training and physical activity, medical management and environmental or home modifications. Get answers to frequently asked questions about falls and aging adults from the National Institutes of Health’s SeniorHealth.gov. Learn about fall prevention programs and strategies from the National Falls Prevention Resource Center. For more information, read “6 Steps for Preventing Falls” for more information.

“Pawsatively” Helpful: AT for Dog Care

By Laura Hall, MATP Staff

Adler in a service dog vest laying downA few weeks ago, I attended a training that was more intense and grueling than any other training I’ve given or received, but the reward was life-changing.  For two weeks I attended “Team Training” through Canine Companions for Independence to receive my second service dog.  After working with many dogs and learning a litany of commands, I was matched with Adler, a yellow lab/golden retriever cross.  Adler, although he is not technically assistive technology, assists me in many ways.  For example, he picks up dropped objects, helps get laundry out of the dryer, tugs the basket into my room, turns on light switches, opens doors, and can help me complete retail transactions at high counters, by giving the cashier money, taking the bag and delivering it to me.  Having him has already helped me increase my independence greatly, yet, we still rely on assistive technology to help take care of each other.

Adler using a tub rope to open a doorAdler needs a few tools to help him do his job.  One of the most important tools he uses is the tug rope.  This can be an actual rope or just fabric braided together and knotted at the end.  I can tie this to laundry baskets, doors, and drawers so he can tug them open.  Upon returning to work, I was surprised that Adler could not find the power door button.  When observing his behavior, it looked as though he didn’t know where to target his nose.  I realized that he was used to pushing power door buttons that were circular, like the one at the training center.  A co-worker had the idea to paste a cardboard cutout of a round button over our rectangular button, and immediately he recognized where he was supposed to push.  During the course of the week, we cut the circular cutout smaller and smaller until he was able to target just the rectangular button.  I suppose even the smartest of dogs can use some basic, low-tech AT.

Round accessible power door button pasted over a smaller rectangular button

While Adler can do many things, he cannot, unfortunately, feed himself, fully groom himself, or clean up after himself in the yard.  This is where assistive technology comes into play for me.  Before we even returned home, I purchased an elevated food and water dish, with storage space underneath for the dog food.  This allows me to fill his bowls without attempting to reach them on the floor or missing the bowl by pouring from above.   Elevated dishes are also better for dogs’ hips, back, and neck, and promote better digestion.

Contrary to popular belief, many dogs, and Adler in particular, love to be kenneled.  It provides him with a safe, quiet place to relax and also prevents him from getting in trouble when I have to leave him unsupervised.  Finding the right kennel was a challenge.  Most wire kennels have a small latch or pinching mechanism that was too difficult for me to manipulate with poor fine motor skills.  The best solution I found was a soft crate that zips around the entire door.  Sometimes I still have difficulty getting the zipper around the corners at the bottom of the crate, but I am experimenting with various types of zipper pulls to try to problem solve.

The scooper genie with arrows showing how the bags attach and the spring loaded eject mechanismThen, there is the most joyous of dog owner responsibilities, poop scooping.  I tried many many different types of scoopers with my first dog, with only a relative amount of success.  I was never able to effectively manipulate a rake and dustpan type or a squeezable claw.  Even if I did manage to successfully grab the waste, getting the bags off the scooper and into the garbage was another (also unsuccessful) task.  This time around, a classmate brought a demonstrated a scooper I had not seen before.  The Scooper Genie is a lightweight telescoping scooper with disposable bags constructed with a wire frame which holds them open.  It allows you to scoop underneath and from the side, and has a spring-loaded mechanism that enables you to eject it straight into the trash.  There is no bending, touching the waste or knot tying involved.

finger toothbrushFinally, grooming is an important part of my routine with my service dog.  Not only is grooming important for his health, it is important as we continue to build our bond.  In training, we learned that physical touch and care is important for trust building and the dog’s sense of safety.  In order to do this, I needed to ensure that I could reach Adler and groom his entire body.  Currently, I use my shower chair as a grooming bench, but there are grooming tables (which I’m looking into purchasing soon) designed for easier access and reach for bathing, brushing and other routines.   Other tools we use in the grooming process include a grooming mitt as opposed to a brush for brushing fur, which is easier to hold, a fingertip toothbrush that allows me to better access his teeth, and enzymatic toothpaste, which has special enzymes that when they come into contact with air forms hydrogen peroxide.  Enzymatic toothpaste only needs to come in contact with the dog’s teeth to begin working.  This is a benefit for a dog like Adler who prefers to lick the toothpaste rather than have it brushed on (but begrudgingly complies).

I’m sure that I will discover other AT that will help Adler and I as we continue to grow as a team, and I am looking forward to our long working and loving relationship.  For more information on AT and our furry friends (including cats!), check out our archived webinar, “Devices to Help With Pet Care”

Memorial Day Post: The Larger Possibilities of AT

Memorial Day has been a time of taking stock since it was created. The holiday has the strength of being recreated every year in a form that reflects the personal histories and connections that veterans, their families, and their friends have with their lived experience, their social networks, and the larger society.

A veteran dressed casually in a wheelchair looking at part of the Vietnam Memorial Wall that means something to him on a warm summer day
Reflection

It seemed reasonable to me as a veteran to think about the ongoing importance of personal support in the crafting of freedom and choice in each of our lives on this Memorial Day, the 50th since I first entered Vietnam.

Over time, I have come to see Assistive Technology as far more than devices or single-purpose apps. To the extent that we focus on the small affordances that devices enable, as important as those affordances are, we miss out on the core purpose of AT, which is to facilitate universal access that allows each of us to forge the life we want and not just the life we have been dealt.

To me, that means that social connection enabled by technology is as much AT as an automatic can opener, and, to the extent that our vision of what AT can do extends to all who use it, and not just those of us who see ourselves as part of our common disability community, the use of AT builds inclusion and lasting social relationships throughout our society.

So, one of the values we need to remember on Memorial Day is the way our personal reflections and our personal struggles for choice and freedom must facilitate the building of all our futures together.

Using Amazon Echo in an Emergency

Amazon Echo Dot

By Jen Mullins, BS, CTRS, MATP Staff

Earlier this year, I watched a very interesting video on the Pennsylvania Assistive Technology Foundation PATF’s facebook page.  Woman seated in a shower, her wheelchair nearby.The woman featured in the video is a wheelchair user and shared that she uses a shower chair while showering.  She said if there’s an emergency in the shower (such as if she starts to fall out of her chair) and she’s by herself, she can’t physically unlock her phone to call for help, but she can Amazon Alexa to call someone in her life for help.  I recently met someone who uses a powerchair and he communicated that he can’t afford an Apple Watch or a newer iPhone, but wants to be safe in his home. His solution was to buy 2, Amazon Echo Dots (about $49.99 each vs an Apple watch that is about $329-$399).  He shared that he knows that the two places in his home that he’s most likely to fall are his bathroom and his kitchen.  By putting 1 Echo Dot in his bathroom and 1 Echo Dot in his kitchen, he knows he’ll be able to call someone if he falls.

More and more, traditional Personal Emergency Response Systems (PERS) are being replaced by Smart technology (like Apple watches, Amazon Echo’s, and others) and being used in even better/more helpful ways.  Why the shift? I really think it comes down to cost and user interface. People who choose to use Smart tech to contact family/friends/neighbors/etc. in an emergency are:

  1. Talking to someone they know (who likely knows how to best help) versus strangers who are a part of a traditional PERS.
  2. Not paying any additional, monthly fees (other than what is included with the device in general such as an Amazon Prime membership or wifi or cellular data plan).
  3. Choosing how they get help (having more autonomy over their lives).

Amazon Alexa Echo Dot resting on a stack of books.Writer and podcaster, Brant Huddleston, shares in his recent article why traditional PERS systems/fall detection systems didn’t work for his older mother, but why the Echo Dot definitely does.  Huddleston writes, “My experience installing the Echo devices has been a sheer delight, and with their naturally intuitive voice interface (Alexa), my mom has taken to the technology like a duck to water. We are both continually surprised at the opportunities Alexa offers to engage her intellect, expand her world, reconnect her with friends and family, and generally improve her life. Voice first technology, like Alexa, is increasing the probability that my mom’s wish will come true, and barring a fall, that she can age in place with dignity until the day she dies.”

Amazon even has specific skills for the Echo that can help during an emergency.  I cheer when people don’t have to accept supports that don’t work for them and can “hack” the system to get the supports they need and how they need them. I’m glad more and more Smart supports are being created/finely tuned and offered to more users.  Apple watch on a person's wrist.If you’re interested in learning more about how the Apple Watch can be used in an emergency, read Kathryn’s blog post: A Personal Emergency Response Alternative.  

Do you use Smart technology for PERS?  Would you consider using it? Comment your thoughts!

Wheelchairs and Airline Travel: A Turbulent Experience

By MATP Staff Member Laura Hall

Earlier this month, I had the opportunity to represent the Michigan Assistive Technology Program at the National Symposium of AT Act Programs meeting and visit Capitol Hill to speak with legislators about the importance and benefits of assistive technology.  Typically, I fly to this event, but due to some bad experiences in recent years, chose to travel by rail (an adventure all of its own that I will write about soon).

Cartoon of an airline conveyor belt delivering broken wheelchair parts to a wheelchair user
Photo Credit: Doug Davis, New Mobility Magazine

If you use a mobility device or other type of expensive AT, I’m sure you can understand why I made this choice,  Taking a flight often means you’re taking the gamble of your equipment coming out in one piece.  Since most mobility devices can’t be brought aboard, they are typically stored below with luggage, and just like luggage, they can be lost or damaged.  I’ve had my power chairs arrive at my destination with broken armrests, headrests, joysticks, and in one situation, completely inoperable.  Airlines are required to compensate for damaged wheelchairs, however, the process of getting payment and the repair itself can take many months.  I am not alone – a United Spinal Association Survey of Wheelchair Damage and Air Travel found that on average, people with disabilities experience wheelchair damage aboard flights 1 to 3 times.

A few companies have marketed products to improve transferring and protect equipment in-flight.  For example, the Comfort Carrier and Transfer Pants are portable products that claim to assist with transfers during travel.  “The Flyer” Wheelchair Protection Case is a rigid box with a top and bottom piece that claims to be “armor for your wheelchair”.   It should be noted that there are few reviews on these products and the MATP never promotes or endorses any particular piece of assistive technology.

Fortunately, there are disability advocacy groups working hard to require better standards related to passengers with disabilities and their mobility equipment.  I recently participated in United Spinal Association’s webinar: How to Improve Air Travel for Wheelchair Users.  In addition to discussing the problems that passengers with disabilities experience, the presenters also spoke of efforts that are being made to improve air travel.  Specifically, they are working with lawmakers to pass the Air Carrier Access Amendments Act of 2017-2018.  This legislation would increase penalties for damaged wheelchairs, and allow passengers with disabilities to sue in court.  It would also require higher standards for accessibility, safety, and airline/airport employee training.  Finally, it would help create a Passengers with Disabilities Bill of Rights and a federal advisory committee on the air travel needs of passengers with disabilities.  If you would like to support this legislation, United Spinal urges you to contact your legislators to co-sponsor and support S. 1318 (Senate) and H.R. 5004 (House).

Have you experienced problems with air travel?  Do you have tips or tricks for minimizing the chance of damage to AT equipment?  Leave us a comment!