Thursday, October 31, 2019

UATP presenters reflect on “proving” disability


Sachin smiles, a microphone in one hand and a white cane in the other.
UATP Director Sachin Pavithran at the "Disrupt" event.
Two UATP presenters spoke at the “Disrupt” 2019 Inclusive Excellence Symposium at Utah State University on Wednesday. While their presentations were very different, they both spoke of the frustrating and sometimes infuriating need to “prove” their disability—or their ability. 

This led to some reflection on whether people who use UATP services need to prove their disability. (The short answer is mostly no, they don’t—but keep reading.)

Proving ability


UATP Program Director Sachin Pavithran was once confronted by a professor after he turned in a major paper. Pavithran was studying information systems at the time, and the project was a paper on how to structure software design. It was a major project that counted heavily toward his grade, and because Pavithran is blind, the professor was convinced he had plagiarized. 

“I was called into his office and he asked, ‘Who did your project,” Pavithran said. “Not, ‘How did you do your project.’ His assumption was, ‘Who did your project?’”

In an interview this morning, Pavithran said he isn’t sure if the professor didn’t believe he could type it up himself, or if he just thought Pavithran couldn’t have conceptualized it. He is sure the professor wanted him kicked out of the program. Pavithran ended up in a meeting with the professor, his own academic advisor, the department head and the director of the disability resource center. The professor questioned not only the paper but the tests Pavithran had taken at the DRC. 

Pavithran's academic advisor had a daughter who was blind, and she was a fierce advocate for him. The disability resource center director outlined the steps her center had taken to make sure the tests were fair. And in the end, Pavithran remained in the program, with a C in the class. He remains convinced the final grade—which was based on two nearly-perfect tests and that one project—was assigned to him because of suspicion, not because he earned it.

Social Media Specialist Storee Powell at the "Disrupt" event

Proving disability


In a separate presentation later in the day, Social Media Coordinator Storee Powell described how draining it is to have an invisible disability that she must prove to others, again and again, as they seem to expect her to justify the need for services or accommodations.

Powell looks young and healthy, but she was diagnosed with Ehlers Daniels Syndrome in 2018—after 10 years of misdiagnoses, chronic pain and a host of other worsening symptoms. 

It was a long, painful wait for a correct diagnosis. “If you don’t have a name for what you have, you kind of don’t exist,” she said. “It was really hard to explain it to the people around me.”

Powell urged her listeners not to ask anyone—even those who look healthy—why they need an accessible parking stall or bathroom stall, or why they use an elevator or need extra bathroom breaks. People with disabilities often have to ration their energy, she said; it’s best not to make them spend it justifying why they need accommodations.

Will you have to “prove” a disability to receive UATP equipment?


The short answer is no. UATP has locations in Logan, the Uintah Basin and Salt Lake City. None of the locations deal with insurance. They simply don’t work with insurance companies.

The facilities in Logan and the Uintah Basin offer devices to people who need them through the reuse of refurbished equipment, or by customizing a device to fit individual needs. Sometimes fees are charged to cover the cost of the materials. Both locations also have demonstration and loan libraries that allow people to learn more about available technology, and even try it before they decide what to purchase.

Coordinators don’t need a doctor’s note or a diagnosis to provide these services. If they ask their clients questions, it is with the goal of matching the person’s needs to the right assistive technology.

The Salt Lake City facility focuses just on refurbishing mobility equipment like walkers and wheelchairs (at last count, their inventory was more than 400 devices). There, too, a diagnosis or doctor’s note isn’t necessary. 

About our financial services…

UATP also offers financing to help people afford assistive technology devices. Proof of disability is not required for UATP’s small grants or reduced-interest assistive technology loans. 

Proof of disability is required for UATP’s reduced-interest, small business loans to entrepreneurs with disabilities. These loans are often used to start or expand a business. While they may be used for purchasing equipment, they may be used for other purposes, too. 

Thursday, October 10, 2019

Customized bike pedals prevent injury in Logan

action shot
Wyatt Goodwin, using his customized pedals
LOGAN--Wyatt Goodwin likes having some transportation, and his physical therapist likes him to ride his recumbent bike. But when his foot slipped off the pedal last year, the bike kept rolling forward. Its crossbar rammed into Wyatt’s leg and dragged it under the bike, breaking his tibia and the growth plate that goes into the ankle.

“I had a lot of outdoor plans,” he said. He’d been looking forward to camping, hiking and biking over the summer. Instead he had to take some time off his leg to heal. 

This year, physical therapist Shaun Dahle told the Goodwins that the Utah Assistive Technology Program in Logan can make customized bike pedals, designed so the foot doesn’t slip out of them.

The Goodwins already knew about UATP, because they’d gone there for help with a scooter Wyatt had used in the past. They went back and started working on the pedal project with UATP employee Brandon Griffin.

Velcro straps wrap around the foot
Wyatt tightens the pedal's straps
“We traced the shoe onto a piece of paper,” Griffin said. “Then we transferred the pattern of the shoe onto three-eighths inch plywood.” They added a “lip” from thermal plastic, molded to fit around the heel portion of the pedal. They designed some Velcro straps after consulting with Dahle, making sure the straps fit around Wyatt’s foot and held it to the pedal for added security.

The customized pedals can be adjusted for a sharper or shallower angle, and they can be removed and attached to different bicycles. UATP in Logan charges for the cost of materials in customization projects. In this case, the bill came to $10.

“They did it just perfectly,” said Heather Goodwin, Wyatt’s mother. “It’s a huge difference.”

Today, Wyatt can ride his bike with confidence, and without injury. So is the exercise for fun or therapy? 

“It’s both,” he said.

Wednesday, September 25, 2019

2 new videos explore AAC apps

Both can be checked out from UATP library

UATP has added five augmentative and alternative communication apps to the devices in our demonstration and loan libraries in Logan and the Uintah Basin. These devices are available for checkout to families who want a little more background on the technology. These apps range from $100 to $300, so this is a good way to get more information before making a purchase.

We have also added two videos that give a quick introduction into two specific apps: TouchChat + WordPower and LAMP Words for Life.

TouchChat with WordPower is an AAC app that includes options for people who already have communication skills, those who are just beginning to talk, and those with aphasia.



One of LAMP (Language Acquisition through Motor Planning) Words for Life's main features is semantic compaction, or the use of multiple-meaning symbols to help the user access a lot of language on a single page, and to quickly access related words. It also helps the user by making words available in only one location in the app, so they know exactly where and how to find it.




In addition to these two apps, the UATP demo and loan library has added Snap + Core, Predictable and ProLoQuo to Go.

For more information on checking out the iPads with these programs, contact Cameron Cressall in the Uintah Basin and Dan O'Crowley in Logan.

Wednesday, September 11, 2019

UATP inducts some new members into the 200 Club


 
devices grouped on a table
Pictured: the C-Pen reader, iRobot Roomba,
Liftware, My Notifi and Victor Reader Stream
We hear it again and again: disability is expensive.

So UATP is adding items to its demonstration and loan libraries in Logan and the Uintah Basin. Our hope is that people try a device and see if it works for them before they buy it. 

This summer, several items were inducted into not only the libraries, but the more exclusive 200 Club (that’s a group of devices that cost around $200 or more). They are available at both the Logan and Uintah Basin locations. To borrow an item from UATP in Logan, contact Dan O’Crowley. To borrow one from the Uintah Basin, contact Cameron Cressall. For a comprehensive look at our demonstration and loan library inventory, visit our website.

Here’s a look at the devices, what they do and how they might help. (None of the information below is intended as an endorsement—just information that might help in your assistive technology decisions.)

C-Pen Reader

This device can scan single words and define them, or scan whole lines and read them aloud. Useful for people with learning disabilities and reluctant readers. The Codpast offers a video review so you can see it in action.

iRobot Roomba 690 autonomous vacuum

We added this item after talking to professionals who serve seniors, who told us vacuuming can be a source of strain and injury to sensitive backs. This model will work with Alexa. 

Liftware silverware

These specialized silverware items have been in our libraries for a couple of years now. They come in two varieties. One, the Liftware Level, keeps the spoon or fork level for people with contractured hands (see this video review from Spashionista). The other, the Liftware Steady, helps counteract hand tremors. UATP did a quick introduction of both devices in 2017. 

My Notifi fall detection*

Worn like a watch, this system sends out a notification if it detects a fall. It also suggests exercises that can build strength and help prevent falls. KSAT 12 offers a video review.

Victor Readerstream

This pocket-sized device will access Library for the Blind materials, as well as DAISY books, MP3, MP4 and EPUB files. It is a pocket-sized device with large, high contrast buttons. To find out more, watch a video introduction on the Statewide Vision Resource Centre’s YouTube channel.

*A version of this system costs less than $200. 

Friday, September 6, 2019

Magna woman rolling again, thanks to UATP and friends

Karon poses on her wheelchair,  holding up a soft drink refill she got on her own.
Karon Duckworth loves the independence that comes
with her new wheels.

Three agencies worked together for a quick solution

MAGNA--Karon Duckworth was going home on the bus one day when cars were parked in the bus’s unloading zone. The driver let her off at a different spot; one that required Carol to motor in her wheelchair through some rough ground.

 “My chair got stuck and it bottomed out trying to get through the grass,” she said. The bus driver tried to help, but by the time she got back to the pavement, her chair was scraped up and it barely moved. Over the next 35 minutes, she crawled past five businesses.

 She enlisted her daughter and her daughter’s boyfriend to help out. “During that time it was flipping gears. It would speed up and go really really fast and then it would just stop.” They eventually manhandled the chair into her house. “There was no way I was going back outside with it,” she said.

 Duckworth's story has a happy ending. She came in contact with the Utah Transit Authority’s ADA Compliance Officer, Cherissa Alldredge. Alldredge knew that a non-functioning chair is a serious thing--and that patrons, especially wheelchair patrons--should only be let off at an official stop. “I immediately suggested she contact our claims department to file a claim,” she said.

 Alldredge then discovered that Duckworth knew Tom Boman, the Utah Assistive Technology Program’s Salt Lake City Coordinator. In fact, the chair Duckworth had been driving was from UATP. They talked about getting her a loaner chair from UATP while her broken chair was repaired.
 Then Duckworth found out a chair was ready for her right away.

 “And I said, ‘What? You mean a loaner, right?" Duckworth said. "And they (Boman) said no, we have a chair for you.”

 The new-to-her replacement chair came through UATP in Salt Lake City, though the Utah State Office of Rehabilitation. Sharry Jolley, a vocational rehabilitation counselor in Richfield, knew its history.

 “It was returned to us by a client,” she said. He couldn’t use it because he needed a head rest, and that chair didn’t have one. So he found a different wheelchair that would work for him at UATP in SLC, and returned the one that didn’t work to the Richfield Office.

 The Richfield office donated the client’s chair to UATP, and Boman knew it would be a perfect fit for Karon. UATP’s service fee was covered by UTA, so Duckworth didn’t have to pay for her new wheels. She was rolling again. Her old chair went back to UATP to be scrapped for working parts. And the new-to-her chair is better than her old one was, pre-incident.

 “It’s a little bit newer than I had,” Duckworth said. “I took it out and on the bus, and it was so easy to get on the bus with it and I went up hills with it… It’s the difference between night and day.”

 The new wheels mean she can continue going where she needs to go on the bus, shop, attend appointments or roll down the street for a drink refill.

 “The silver lining in this is that the new device is better than the old one she used to have,” Alldredge said.

 It is also the result of three agencies working together for a fast solution. 

“I’m so independent in it. I feel like a movie star," Duckworth said.

If there's a moral to the story, it's this.

Automobile drivers, please don’t park in a bus unloading zone. UTA drivers are trained not to drop clients—especially those who use a wheelchair—off at a place other than the official bus stop, Alldredge said. It should not have happened. But now and again, automobile drivers park in a loading zone, and that causes problems.
 “We are working on painting the curbs red,” she said. But since UTA doesn’t own the right-of-way, the process is complicated and piecemeal.
 So please, motorists, park courteously.

Tuesday, August 20, 2019

Back to school: Favorite tips and resources from UATP



illustration

Is your child preparing for that first day of school? Are you going back to school yourself? Here are some things to make the education journey a little easier.

The Utah Assistive Technology Program has added some new items to the Demonstration and Loan Library in Logan and the Uintah Basin. To check them out or to receive a demonstration, contact Dan in Logan or Cameron in the Uintah Basin.

For the blind and visually impaired

·     A Victor Readerstream will access Library for the Blind materials, as well as DAISY books, MP3, MP4 and EPUB files. It is a pocket-sized device with large, high contrast buttons.

·     A large print keyboard with high contrast keys may help your student with homework assignments.

·     A talking book player will help you access tons of free material from the Library for the Blind. You can use your own for free, but if you’d like to see how it works first, come to UATP for a demonstration.

For those who have trouble getting out of bed on time:

We have a shake and flash alarm.

For families that use communication apps:

·     We have iPads stocked with LAMP words for Life, ProLoQuo2Go, TouchChat with WordPower and Snap + Core First. (We also have Predictable for students who are literate but have lost their ability to speak.) Your child’s school should be your first stop for some great resources, but if you want to know more, would like to explore an app on your own or would just like a little more information so you can help with your child’s homework, contact us!

·     Coming soon: demonstration videos to help you navigate these apps. UPDATE: UATP now has demonstration videos for LAMP Words for Life and TouchChat with WordPower.

For reading and comprehension: 

We have these short training videos, thanks to Kent Remund of the Utah Center for Assistive Technology.


·     Notability


·     CoWriter


Want to know what else is available in our demonstration and loan library? Visit our website.

Have questions? Call us at 800-524-5152. Have a great year at school!

Thursday, August 8, 2019

UATP wheelchair brings long-awaited relief to a Utah girl and her family

portrait in their yard
Tyler, Aubrey and Marissa Peck
AMERICAN FORK--When Audrey Peck was diagnosed with two uncurable and serious illnesses, her family’s life became something of a research project.

The 11-year-old has both juvenile dermatomyositis (JD) and lipodystrophy. The first is an autoimmune disease affecting her muscles and joints. The second attacks the fat under her skin, which in turn causes other problems. Her first diagnosis, the one for JD, came in 2014. 

Her family keeps a small chest-full of medications to manage the two conditions. Aubrey’s been involved in National Institutes of Health studies. Her parents have undergone genetic testing and submitted the stuff they vacuumed off the floor in their home. Their DNA and floor dust were studied so that researchers could better understand the genetic and environmental factors surrounding Aubrey’s health. 

Doctors at Primary Children’s Hospital in Salt Lake City told Aubrey’s mother, Marissa, that they have never seen both conditions in one child before, and they never will again.

When her parents told the story around their kitchen table, Audrey shrugged and shook her head. “I’m special.”

Her parents shook their heads, too. “You’re special,” they agreed. 

Then Aubrey looked through the old photos Marissa brought up to show how the diseases had progressed, and cringed. She wasn’t complaining about the diseases. She just didn’t like how she looked in some of the pictures.

Marissa and Aubrey’s dad, Tyler, pointed out that even though Audrey has missed a lot of school, she’s pulling excellent grades. They live in a busy home, with a dog that wants attention and siblings who want to know what everyone else is up to. The family has done a lot to adapt to life with chronic illness, but medical bills piled up. When they decided they needed a new wheelchair to fit Aubrey’s growing body, insurance wouldn’t pay for it. The Pecks couldn’t afford to buy one out of pocket, either.

A new wheelchair would help keep Aubrey off her feet. “She would call me all the time, ‘My feet hurt, my legs hurt,’” Marissa said. They hurt often, but especially when she’s on them too much. 

Meanwhile, Aubrey was squeezed into a stroller-chair intended for a much smaller child. Not only was it too small; it made Aubrey dependent on having other people push her. She solved this by sitting in the stroller and pulling herself forward with her heels, but that defeated the purpose of relieving the strain on her feet and legs. 

Marissa wanted Aubrey to stay in school as much as possible. She misses a lot due to her health conditions; it was discouraging when she wanted to go home because of the pain in her feet. 

Eventually Marissa and Tyler decided to sell a vehicle and use the money to buy a wheelchair for Aubrey.

They found a buyer. Then the person who was going to buy the car drove off with it without paying for it. They never got the money and they don’t know where he went.

A friend suggested they go to Ability 1st Independent Living Center in Provo to see if they could help with a chair. Ability 1streferred them to the Utah Assistive Technology Program in Salt Lake City. That’s where they met Tom Boman, UATP’s Salt Lake City coordinator. He worked with them to make sure Aubrey received a chair that fit her. 

It's blue, like she wanted. What’s even better: it’s lightweight, and it’s easy enough to put together, Aubrey can do it herself.  

With the new wheelchair in hand, Marissa gave the old stroller-style chair to the school. Another child was using it a week later.

While the journey has been long for the family, Marissa has a strong desire to give back and pay forward. The family has received a lot of support from neighbors, people in their church congregation, and the school. 

“We don’t know what the future holds, and the doctors don’t, either,” she said. “But we have a good team. A really good team.”

_____________

UATP is part of the Center for Persons with Disabilities at Utah State University. The Salt Lake City location transfers donated, refurbished chairs to people who need them, for an affordable fee. For more information, call 800-524-5152.