Maintaining Your AT – Wheelchair Edition

By Lucia Rios, Guest Blogger

Someone resting feet up on an empty wheelchairOne of the most important pieces of assistive technology in my life is the manual wheelchair. It’s the accessory I never leave home without. Wheels enable my independence. Wheeling gives me confidence. Not only has my wheelchair been customized to fit me, but each ding, scratch and tear tells a deeper story of its use.

I use my wheelchair 365 days a year. I use my wheelchair from the moment I wake up until the time comes for sleep. That’s a lot of time!

Yet my wheelchair is not just an object to get me from one place to another, it’s part of my world and loved.  Just like a car, a manual wheelchair can only take so much. I think a wheelchair undergoes more abuse than a car because the demands of its use are constant. And yet it’s like owning a car – you’ve got to keep it running.

I must admit that I’m totally clueless when it comes to maintaining a car, which is why I use a mechanic. You can ask for referrals from friends and there seem to be many options on places to take your car. However, I realized that durable medical equipment providers – such as Airway Oxygen and CareLink – are not always the easiest to connect with or affordable when on a budget.

Let’s be honest, it’s an expense to own a car and the same goes for maintaining a wheelchair. As I started to utilize my wheelchair more often I noticed the upkeep took time, money and problem solving.  I’m not one to keep my information to myself, so here are solutions I learned along the way.

Bike Shops

road bike hanging in repair shopTo be honest I didn’t think of this solution by myself.  While interacting with a new friend – who also uses a wheelchair – I told my woes about wheelchair maintenance. Having to make an appointment at the medical equipment provider, high costs, etc.  He asked if I thought about using a bike shop.  I hadn’t.  

So I started visiting bike shops.  I asked for help airing my tires, and inquired about buying tires for my chair.  The first pair I bought were under $30 and there was no service fee to put them on!  I was hooked.  I ditched the medical equipment venues and went to my local bike store for all my wheelchair maintenance needs.  

Tires, lights to use at night, tightening of spokes and unexpected flats – the bike store was my go to.  Better yet, I didn’t have to schedule an appointment!  With each request I was treated with dignity, charged a reasonable fee, and air was always free!           

Online Stores

When I was being fitted for a new wheelchair – which is exciting because at that point my wheelchair is on its last spin – I hear what insurance considers “extras”.  

  • Tires with better traction for snow – an extra $100 to upgrade.
  • Vibrant colors – insurance won’t cover your preferred choice so you’ll have an out-of-pocket expense.
  • A bag to hold personal items – sorry you’ll have to pay $50 for a standard black tote.
  • And the list goes on.  

Frustrated and looking for a cheaper solution I went online.  I was excited to see their were options for a wheelchair user that were not only affordable, but trendy.

Social Media

I’m a huge fan of social media, especially when it comes to spreading awareness about the disability experience.  Being able to use pictures to explain barriers that I face in my day-to-day life has been a great way to educate, but also challenge others to think of their environments.  Facebook has also been a go to when I’ve run into problems with flat tires, inaccessible venues and a quick way to ask for assistance!  

Once my tires went flat while I was at the store.  I typed a quick message on Facebook, asking if anyone knew of an open bike store – it was business service hours.  Within minutes I had offers to assist, website addresses to bike shops, and a person willing to pick me up!  I took up a friends offer and met him at the local brewery so he could patch up my tire.  He fixed it, bought me a beer and gave me my own small tire repair kit!  

So, I’m curious, what maintenance tips do you have for your AT?

Advocacy Help for AT

By Aimee Sterk, LMSW, MATP Staff

A manual wheelchair reclined back showing the various angles of the tilt in space featureMy friend contacted me last week asking about the process for working with a nursing home to get his father, a resident in the home, a new wheelchair. It seems the nursing home suggested a very specialized wheelchair to meet his father’s needs, but when the home was told they had to provide the wheelchair out of their regular per diem rate, they were now suggesting a far cheaper, inferior option. That made me think it was time for another blog about advocating for AT needs.

There are a couple options to help you advocate for your needs for assistive technology (AT) or durable medical equipment (DME) in Michigan.

If you have a MI Health Link Plan (a combination of Medicare and Medicaid) the MI Health Link Ombudsman Program is here to help you access the DME you need if you have been denied coverage or are having trouble getting what you need. Call them directly—lawyers answer all the calls and are ready to help—at 888-746-6456. It is also possible to contact the Nursing Home Ombudsman program if the nursing facility is not providing needed AT at 866-485-9393 or 517-827-8040 for the State Long Term Care Ombudsman.

If you need help getting AT or DME through your school system, community mental health, the MiChoice Waiver, Medicare, Medicaid (or Medicaid funded nursing facility), or Michigan Rehabilitation Services (if employment related), contact Michigan Protection and Advocacy Services’ AT team at 800-288-5923. Michigan Protection and Advocacy Services receives direct federal funding to help people with disabilities of all ages access the AT they need.

The following is from Justice In Aging:

“Consumers with both Medicare and Medicaid face recurring problems getting approval for Durable Medical Equipment (DME), getting repairs, and finding reliable suppliers. DME includes many vital items, such as wheelchairs, walkers, hospital beds, home oxygen equipment, and even diabetes test strips used with a glucose monitor. ”

Some of the obstacles in getting access to DME include:

  • Conflicting DME approval processes for Medicare and Medicaid
  • DME access problems for people who have Medicaid first and then become eligible for Medicare
  • Getting coverage for repairs, particularly getting Medicare coverage for an item originally obtained through Medicaid
  • Differences between Medicare and Medicaid approved suppliers (many providers are approved for one program, but not the other)”

It is so important that people access the equipment they need to live in the setting of their choosing. Please, use the advocacy services to get the AT/DME you or someone you care about needs.

Have you contacted Michigan Protection and Advocacy Services for help with getting AT? Have you used an ombudsman program? What was your experience? What other advocacy tools have you used?

 

Organization Made Easier

By Guest Blogger Kellie Blackwell, Disability Network Capital Area

 

Pen Friend 2 with buttons labeledThe Pen Friend is a device that I have demonstrated to many individuals over the last few years. It is a great tool for labeling many things. I wanted to take a moment to share some of my tips for maximizing its use. I would love to hear from others as well, please feel free to share any ideas you may have on ways it can be used.

As someone who experiences vision loss, I have found it to be useful with labeling file folders; keeping track of utility bills and other important household documents. I have also found it useful for labeling different items that may have detailed instructions. An individual that I was working with a while back shared that he placed one of the stickers on his iPad, as a reminder tool for some of the apps and important settings within the iPad. I found this idea to be very helpful! Another individual shared that they used it for each of their debit/credit cards, as a way to store the card numbers, as they were not able to see the numbers on the cards. I should also mention that for some tasks, individuals may need sighted assistance.

Pen friend being used to identify cereal boxesI must say one of the most beneficial ways I have used the Pen Friend is labeling grocery items. Here is what has worked for me, as well as for others.

I use the stickers, along with index cards and a rubber band. I place the stickers on the index card and use a rubber band to secure the card on the food item, such as a soup can. This way, when the food/packaging item is used up, I have the index card and the sticker. This also then becomes a way to create a grocery list. I can then take each of the index cards with me to the store.

Pen friend RFID stickers showing large square stickers, small circles, and magnetic buttonsI also love how each of the stickers can be reused. As an example, think of when you have thrown out the last bit of cinnamon spice and you now need that sticker for a new box of cereal; just place your index card with sticker on your next box of cereal and record over your last message. Also, because the device uses Radio Frequency Identification (RFID) technology, you can also use just one sticker to label, let’s say 4 of the same item!

Interested in trying out this device? Please feel free to contact Kellie Blackwell to set up a demonstration of the Pen Friend and many other devices through Disability Network Capital Area.

A Jagged Gorgeous Winter

By Jen Gosett, BS, CTRS, MATP Staff

December is one of my favorite months! There are lots of holidays and (it seems like) more opportunities to celebrate together with friends & family. The holiday I enjoy celebrating the most during this month is Yule. Yule, also known as the Winter Solstice, is celebrated today & tonight on December 21st, “this is the longest night of the year, meaning that despite the cold winter, the days get progressively longer after the winter solstice.  The winter solstice is celebrated by many people around the world as the beginning of the return of the sun, and darkness turning into light.”  Generally, on Yule/the winter solstice my framily (friends who are more like family) and I gather around the fireplace, drink mulled cider, exchange small gifts, play board games, eat a cake decorated with a sun on it, burn the yule log, and just enjoy time together.  “The yule log is a remnant of the bonfires that the people would set ablaze at the time of winter solstice. These bonfires symbolized the return of the Sun.”  In recent years, we’ve also claimed The Main Drag’s “A Jagged Gorgeous Winter” as our holiday song!

During these dark months, I often feel much less motivated and have found that listening to podcasts can be really motivating for me.  I really don’t feel like doing the laundry or dishes or cleaning in general, but I’ve found that if I put an interesting podcast on, I can distract my brain a little and get some work done (or maybe reward my brain for doing the work!).  pexels-photo-374703I think of podcasts as a form of Assistive Technology as they’ve gotten me through some mentally & emotionally challenging times in my life. 

Though I know some friends who listen to podcasts, I’ve found that many people still haven’t heard about them or know how to listen & enjoy them.  I’ve written this post to try to help with that.  If you’re not currently listening, I think you’d really enjoy podcasts if you gave them a try :)!  So let’s start at the top, what’s a podcast?

A mic standing on a laptop computer with headphones in the background.“Podcasts are free audio programs distributed over the Internet. You can download them and listen to them as you please, essentially creating a radio station focused entirely on the topics you want to listen to. There are podcasts out there covering almost any topic that you can imagine – and probably dozens of podcasts on that topic.  Because you can choose programs that match your interests and can swap programs in and out as you wish, it becomes much like having a customized radio station for yourself that you can even take with you wherever you go if you have a smartphone.”

The Podcast Host has created a great guide, How Do I Listen to a Podcast?, that will help you get started, “Here we look at the different ways that you can listen to a podcast, from Smartphone to smart speaker.”  Podcasts can also be enjoyed on your desktop computer and even in your car.  In the car, I especially love that I don’t have to listen through songs I don’t like or NPR shows I’m not particularly interested in.  I can be my own radio show programmer!  Stitcher logoMy favorite way to listen is by using the Stitcher podcast app on my iPhone (also an Android app).  I load the app, scroll through shows I’ve saved, and search for new shows I might enjoy.  There are built in help features so if I forget how to do something, the app reminds me.  🙂  The Stitcher podcast app is free and so are the shows I listen to on there (they do offer a paid, premium version, but I feel like I need it).

As I was preparing & planning to write this post, I started to think about podcasts I wanted to recommend. Two people looking on their smartphones together.Then, I had a better idea: include what others AND I like.  There are so many different podcasts that cover so many different topics!  From America’s Test Kitchen to Anderson Cooper 360; the topics & show choices are endless.  Here are a few suggestions from people in my life; my own recommendations are at the bottom of the list.  If you listen to podcasts, what do you listen to? Comment! 🙂

Katie W’s recommendations: I listen to Buffering the Vampire Slayer-which is about…Buffy the Vampire Slayer. Each week the hosts watch episodes one at a time (it starts from the pilot and as of right now they’re in season 3), and they discuss the episode.  I also just started Rupaul: What’s the Tee? with Rupaul and Michelle Visage-they basically just pick a topic and talk about it. Usually relating it back to their own life

Greg’s recommendations: Tanis, Rabbits, & The Black Tapes are all great sci-fi/horror stuff. Wolf 359 is a more comedy leaning space adventure. If you’re interested in history, History On Fire is a great in depth look at a variety of historical figures and eras. If you like old time radio, Thrilling Adventure Hour is a comedic spin on that style.

Katie C’s recommendation: She-Explores is my favorite! It focuses on women’s adventures in the outdoors. It’s empowering, inspiring, and often includes good story telling.

Jessica’s recommendations: Heard a great one on Living Myth. I listen to podcasts from End of Life University. There are some interesting topics.

Bri’s recommendation: The only one I listen to with loyal regularity is Thinking Sideways. It’s a round table style (two men and a woman) discussion on an unsolved mystery each week. They cover true crime, cryptozoology, mystery people, conspiracies you name it. They have great chemistry and I like their approach.

Diana’s recommendations: I love The Moth Podcast, Ted Radio Hour, Ted Talks Daily, and StoryCorps.

Beth’s recommendations: I second “The Moth“. Also enjoy “99% Invisible” it kind of sort of focuses on the broad topic of design.

Lindsey’s recommendations: For politics + humor: Lovett or Leave It, Throwing Shade, Fake the Nation.

Jesse’s recommendation: The Fantasy Focus Football podcast; I listen to stay up to date so I can manage my fantasy football team.

Mike’s recommendations: I like listening to podcasts while I’m driving.  I like Intercepted, it’s political and keeps people in check.  Pod Save America is a good political one; some of the hosts used to work for Obama when he was in office.  Adventure Zone is fun; people get together & play d&d (Dungeons and Dragons)! And Radiolab has interesting stories that are compelling.

Arika’s recommendations: The Longest Shortest Time is a good parenting one.  Majority 54 & Pod Save the People are a good political ones.  Dear Sugar is a realistic advice column podcast.  Oprah’s Super Soul features Oprah herself talking about spiritual things with different people.

Aimee’s recommendations:
Happier
Another Round
Book Riot
Sporkful
Death, Sex, and Money
Note to Self
Double X
Mom and Dad are Fighting

My recommendations:

  • This American Life‘s show usually focus on topics all of us usually have a relation to (like topics of conversation over dinner).  I like this show because the stories shared on there seem to somehow better connect us all/make us more aware of each others’ life experiences. 
  • The No Sleep podcast is a horror fiction show with voice actors who read fantastic stories!  I can’t see scary movies or shows, but I can listen to podcasts and enjoy the creativity of the stories shared! 
  • Anderson Cooper 360!  My partner and I don’t have cable and thus don’t have access to watching Anderson’s nightly news show.  BUT this audio version of his show is a pretty good free option.  I like & respect Anderson Cooper and appreciate the multiple, different points of view represented on his show.
  • Game of Thrones podcast!  After I watch this show with my partner, he usually has to go to bed and I don’t get to recap/chat about the episode with him.  This show features 2 hosts who recap the episode, talk about theories, and read listener feedback.  I often will learn about things I didn’t pick up during the show and hear interesting takes on the various characters & their motivations.

Holiday Wishes

Continued Universal Design of Products

triangle warning sign with man tripping over a blockI love gadgets and technology that make life easier. Some of the items we’ve added to our house recently are the Amazon Echo and Smart Plugs. My husband has difficulty with fine motor control and balance. We tried other options like a touch lamp and motion detection. Coming into a dark room and finding even an adapted lamp switch or light was a hassle. The cat kept turning on and off our touch lamp and setting off the motion sensor. We connected lamps to smart switches so now he just asked Alexa to turn on the lights.  I am convinced this has prevented a few falls!cat half in a basket on the floor

What is really wonderful about some of the AT options we’ve added recently is they are mainstream consumer items. My holiday wish is for this trend to continue. It is so much easier to build accessibility into the infrastructure than it is to retrofit or do remediation after the fact. Which leads well into wish number two!

More Accessible Web Resources

I attended the Accessible Learning Conference at Kellogg Center in East Lansing this month and was really pleased to see the strides made in making learning, including documents and web resources accessible. We’ve come a long way since I first designed a website using html code back in the mid 90’s!  There is so much growth in this area and it’s a challenge to keep up but so important to strive for equal access for everyone.  It’s just the right thing to do of course, and the recent court cases, like the win against Winn-Dixie and settlements as a result of advocacy by Marcie Lipsitt with the Michigan Department of Education continue the push for access!

Want to learn more about Web Access?

Al Swain at a picnic tableLife is Good

A wonderful  person and friend who was active with the disability community in Lansing once said at a Michigan Disability Rights Coalition (MDRC) Board retreat that his wish for the future was for everyone to wake up in the morning with the thought “Life is Good”.  Thank you Al Swain, I miss you.

Happy Holidays and Happy New Year!
May all your wishes come true!

Watercolor paining of a dandelion flower in seed

All I want for Christmas is some new AT (And I want to share this other article too)

By Aimee Sterk, LMSW, MATP Team Member

This year for Christmas, I am asking for the Fisher Wallace Stimulator device. I heard about it from my therapist. According the website, it uses electrical impulses to stimulate the brain to produce more serotonin and melatonin while reducing cortisol. It can be used for depression, anxiety, and insomnia. Fisher Wallace notes that the device is FDA cleared and has been used in many research studies.

The device is shaped like an elongated deck of cards and has a pyramid on the front with four lights in the pyramid indicating the strength of the neurostimulation and two cords attached to two sponge electrodes.
The Fisher Wallace Stimulator and a man using the device with the moistened sponge electrodes applied to his temples and held in place by a headband. Image from the Daily Beast: https://www.thedailybeast.com/fisher-wallace-stimulator-behind-the-do-it-yourself-shock-therapy

All of this sounds so good to me right now. I was on an SSRI while pregnant with my son and it really helped me combat depression and anxiety associated with pregnancy, losses, and PTSD while I was carrying him. I took half the lowest dose of the medication prescribed. Still, just as I am highly sensitive to meds, it seems my son is too, and he had withdrawal symptoms from my medication after he was born. This was devastating to me at a time that we were already in crisis as my son had to be in the NICU after delivery for another condition.

This pregnancy, I’m determined not to take an SSRI, but am again experiencing significant anxiety and depression. I had looked into non-pharmaceutical options when pregnant with my son (specifically TMS) but the cost was very high, sometimes I met the clinical criteria and sometimes I didn’t, and the commitment of daily, somewhat painful treatment, for 4-6 weeks, at a facility across town seemed overwhelming.

So, this year, I want to try the Fisher Wallace Stimulator as a non-invasive and less costly option than TMS (it still is expensive at $699). I do wonder if I can commit to using the Fisher Wallace twice a day for 20 minutes though–with a 1-year old and another baby on the way along with a full-time job, life is pretty busy right now.

I put the word out there to coworkers, friends and family to see if anyone I know has used the device. It turns out the husband of a friend is currently using it to treat his ADHD and has seen improvements as he tries to get off of his medication.

I also did some googling. In addition to the company’s website, if you are interested, you may want to check out the guest blog on Scientific American that details another user’s story and has links to some relative research. You may also want to check out the reviews on Drugs.com which tend toward neutral or negative with some people wondering about a placebo effect.

Currently, the device is out of reach financially for me, but possibly, when my Flexible Spending Account balance refills January 1st, I’ll get a prescription and consider giving this device a try (unless Santa delivers one first). In the meantime, I’m tracking my mood, taking my vitamin D, practicing mindful self-compassion and the lovingkindness meditation.

Have you tried the device? Did it make a difference in your life? What AT or techniques have you used for depression and anxiety when medication wasn’t an option?

And speaking of mental health, I have to share this amazingly good article that I learned about from Disability Network Southwest Michigan staff. It deeply speaks to me and has also touched colleagues and friends—a must read for people with mental illness and allies. It covers the dangers of being “High Functioning” (the authors words, ones I don’t use myself) mentally ill and touches on the damage of disability hierarchies and the intersectionality of mental health/disability and other identities.  Why I’m Done Being a Good Mentally Ill Person.

The Little Things

cartoon frogs around a minature mobil home with scenary and luggage
A Short Trip

All my life, I have had a fine motor coordination problem with my hands. My cursive writing is illegible. When I was in Catholic elementary school the nuns made me practice my cursive for an hour every day for an entire school year before concluding that I simply couldn’t improve.

My printing is only somewhat better, and if I am in a hurry, it too is illegible. Even my signature shows symptoms of actual brain damage in that my repeated signatures have different numbers of strokes. Computers have been a godsend to me, though not without their problems, too.

I have always simply taken it for granted that I would have a tough time using my fingers for anything delicate. So, I wasn’t surprised when my use of a smartphone was plagued with misses and sliding finger taps, making my use of apps in general and smartphone typing systems in particular fraught with mistakes. I have to double-check everything, even content I have created many times before. I also have a terrible time using the same amount of pressure with my finger each time I do so, often producing no result or one that shows I pushed too long.

Entirely separately, I got tired of wiping the greasy finger marks off my smartphone every morning and decided I would try using a stylus to reduce the grime. I assumed I would have as much trouble with the stylus as I did with my fingers-maybe even more.

Blue Cheap Stylus against fake wood background
A Tool

I was wrong.

There was a vast difference in the quality of my input when I used the stylus as compared with my finger. My error rate dropped very noticeably when I used the stylus, making my smartphone use more enjoyable and productive.

So, If you have trouble with fine motor tasks and it shows up on your smartphone, you might want to try a stylus too.

You can get styluses in bulk for about $.25 each or you can get better quality ones almost anywhere.  The link below is to the Amazon page for styluses that show you the enormous variety and broad cost points for these products. Check to make sure your choice works with your device.

Amazon Selection of Stylus Options page