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What would the world be like today without cell phones or mobile devices? It’s nearly impossible to fathom. We, as a society, have become dependent on these devices for nearly everything we do. We use cell phones for everything from getting travel directions to ordering dinner to be delivered. The capabilities of mobile devices are endless. Some people feel that we are “too connected,” but for most people, their cell phone is like another body part. For many people, including those with disabilities, mobile devices have become a real lifeline.
When cell phones became popular in the late 90s, I never in my wildest dreams thought I’d own one—let alone depend on one. Due to my limited fine motor and speech abilities, having a cell phone didn’t seem beneficial to me. I remember my mom was the first in our family to get one. She had to get it for work and she merely used it to make and receive phone calls. It was so big it barely fit in her purse. Funny to think that that was only about 20 years ago. How times have changed!
It wasn’t until midway through my second year of college that I got my first cell phone. My parents got it for me for Christmas and thought it would be good for me to have in case of an emergency. I could call one of them or my sister, and, even though I’m nonverbal, they knew my speech and schedule well enough to figure out what I needed. My first phone with a stick phone (back then, most phones were flip, but since it had to be my tray, I couldn’t use those). It also had to have protruded buttons because I couldn’t press ones that were sunk in. Finding a phone like that wasn’t easy. My first phone was velcroed on to the mount for my communication device. As I explained in a previous entry, unless I was going to class, because it was so bulky I normally didn’t have my device on my chair; therefore, I really didn’t use my phone very much when I first got it. Eventually, I figured out that I could call my friends and they could pretty much figure out what I needed because again they knew me so well. Actually, I remember I had a lot of night classes, and if they got out early, I’d call a friend and she knew I needed her to call the transportation service to come pick me up early. It worked pretty well.
It wasn’t until a year or so after getting my first phone that I realized that I could text. I was playing on my phone waiting for my Art History class to start and I found the text message option. I texted my sister asking when her knee surgery was. Back then, I didn’t even know there was word prediction on my phone, so I typed the message out using the number keys. We didn’t realize it at the time, but sending that message changed my life. Because of my limited fine motor ability (I do everything on the computer on an enlarged keyboard with a keyguard using the last two fingers of my left hand), nobody ever thought I’d be able to text.
While I’m sure I did to some extent, I don’t remember texting nearly as much in college as I do today. For me, it was definitely an access issue, but I also don’t remember texting being as popular it is today. After graduating, when I moved back in with my parents, my dad figured out a way to mount my phone to my wheelchair. Thankfully, he’s a pretty handy guy and used a footplate from an old wheelchair to create a phone mount that fits right by my joystick. Needless to say, having my phone on my chair has changed my life!
After my first phone, I went through two or three more button cell phones. By then, touchscreen phones had become popular, but again because of my fine motor limitations and spasticity, nobody, including myself, thought I’d be able to use a touchscreen phone. After realizing button cell phones were going to quickly become nonexistent, I began looking at my options. After playing with other people’s phones, I surprisingly realized that I could maneuver touchscreen phones pretty well. I’m now on my third touchscreen phone and I absolutely love it! Somehow, I’m blessed with double-jointed thumb which I use to do everything on my phone with. I don’t even use an enlarged keyboard!
Much like everyone else, having a smartphone has opened up a world of possibilities for me. I do everything from emailing, to checking Facebook, to surfing the web, and playing Words with Friends on it. I also text a lot. Undoubtedly, most adults my age text, but, since I’m nonverbal, I use texting in place of talking to people on the phone. I text if there’s an emergency; I text if I need help; I text if I have a question; and I text if I just want chat. Friends and family know that’s the best way to get ahold of me.
Like most people, I have lots of different apps on my phone. Everything from ESPN to The Weather Channel, I have the popular apps. In addition, though, I have some apps that are unique to my circumstances. One of the apps is an emergency app which just a simple text box that has basic information about me and tells about my disability and explains how to best communicable with me. If I would get stranded somewhere, I could open the app and have people read how to help me.
The second app that really has made a huge difference for me is Proloquo2Go. It’s the communication app that I’ve had on my iPad for a few years now. I didn’t realize I could have the app (it’s a paid app) on more than one device until late last summer. I was playing around on my phone, and I tried installing it. I was so excited when it worked! Although I still don’t use the app like I’m supposed to (I don’t do much programming unless I have a presentation or something), I still use it to spontaneously talk to people. I type out what I want to say and it speaks. It’s really cool because now I have a communication on my chair that I effectively use because it doesn’t get in my way! Who would have ever thought that a regular touchscreen cell phone would be the answer? I only wish we’d have discovered this years sooner!
Lastly, my parents got me a video doorbell for Christmas. It’s kind of scary to think about, but for years I had been opening the door to my apartment without knowing who was door. I have a power door and when the doorbell would ring, I’d press the opener on my chair to open it, but I wouldn’t know who was there. Being nonverbal and in a wheelchair makes me pretty vulnerable—it’s just a fact of life. This new doorbell works off my WiFi and when it rings, I get a video of who is there on my phone that--so I’m able to see who is at my door before I open it. It’s really cool and makes me feel much safer!
So, for someone who didn’t think she’d be able to use a cell phone to now completing relying on one to help her live independently, I’m very thankful for the evolution of cell phones. I think we’re just at the tip of the iceberg with technology; I’m excited to see what’s next!
***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.
CONSORTIUM FOR CITIZENS WITH DISABILITIES: PRESERVE SUPPLEMENTAL SECURITY INCOME: A VITAL PART OF OUR SOCIAL SECURITY SYSTEM
By SD Network, 2018-01-31
The Consortium for Citizens with Disabilities recently released an updated fact sheet about Supplemental Security Income for people with disabilities. The sheet covered a variety of topics and has some very interested statistics.
People with disabilities have been a demographic that experiences poverty at a rate disproportionate to their peers without disabilities. Recent population surveys have shown that nearly one third of people with disabilities live below the poverty line and they’re more than twice as likely to live in poverty when compared to their non-disabled peers. Poverty can obviously cause food and health care insecurities. There are initiatives that can create partnerships with disability organizations to increase focus on things such as housing, employment, nutrition and health promotion, and health care for those in poverty.
DISABLED WORLD: Delta Introduces Enhanced Requirements for Customers Traveling with Service or Support Animals
By SD Network, 2018-01-22
Airline accessibility has taken center stage recently. Delta AirLines is taking steps to further protect its customers, employees and service animals and support animals by implementing advance documentation requirements for those animals. This comes as a result of a lack of regulation that has led to serious safety risks involving untrained animals in flight. The new requirements support Delta's top priority of ensuring safety for its customers, employees and trained service and support animals, while supporting the rights of customers with legitimate needs, such as veterans, to travel with trained animals.
The CMS Medicare-Medicaid Coordination Office (MMCO) has three new resource guides intended to support providers and health plans serving older adults and caregivers. An estimated four to five million older adults live with dementia in the United States. Caring for these individuals can present unique challenges to both caregivers and healthcare professionals. These two resource guides, one created for caregivers and the other for healthcare professionals, include training and toolkits, fact sheets, publications, and information resources from various organizations and health plans.
Additionally, family caregivers are an integral part of the care planning process and experience for older adults. This guide includes resources that providers can use to support family caregivers, including information about mental health and respite care, care transitions, and evidence-based dementia care training.
ADMINISTRATION FOR COMMUNITY LIVING: Joint Report: Health and Safety in Group Homes
By SD Network, 2018-01-18
At the request of Congress, the Department of Health and Human Services Office of Inspector General (OIG) examined states' monitoring and reporting of injuries and other critical incidents of people with developmental disabilities living in group homes. They found that up to 99% of these critical incidents were not reported to the appropriate law enforcement or state agencies as required. To assist states in making improvements, the Administration for Community Living (ACL) joined OIG and the HHS Office of Civil Rights, along with the U.S. Department of Justice, to develop Model Practices to help address gaps in reporting and monitoring efforts.
UW-Milwaukee is conducting a survey to examine the experiences of people with disabilities pertaining to the accessibility of public buildings, including physical and cognitive barriers that prevent people with disabilities from being able to participate fully in the community. We encourage you to take the survey and share this link with others who may have valuable input, such as people with disabilities and their family members, friends and caregivers.
January 2018
Connect | Share | Learn | http://sdnetworkwi.org/
The Self-Determination Network includes some very talented members and we want to help you to get to know each other a little better. Member Spotlight is a great way for us to get to know each other better.
For January, we shine the spotlight on the Chair of InControl Wisconsin, Kate. As a firm believer of self-determination and self-direction, she loves that this Network brings people together who have the same passion. Stop by this month's Member Spotlight to get to know Kate.
Coming in February...
Beginning in February, the Self-Determination Network will post a monthly discussion question related to self-determination/self-direction. We will be sending out a special message in the first week of each month telling you what the question is and providing you with a link where you can respond. By doing this, our hope is that we can share experiences and learn from each other. Keep your eyes open for the first question!
"Oftentimes, comparing ourselves does no good, but sometimes it can ignite a spark in us and make us realize what is possible!" In January's entry, Stacy discusses how comparing ourselves to others is a part of life. Do you agree? We encourage you to share your thoughts and experiences as well.
Take five minutes to check out what's happening on the Self-Determination Network:
- New Resource: Tyler, a junior at UW-Whitewater, developed a website about transitioning from high school to college when living with a disability. It's full of great tips and resources. Check it out and let Tyler know what you think.
- ABLE Accounts Popularity: According to a recent report, thousands of people with disabilities have opened ABLE accounts, but experts point out that millions more could benefit from them. Find out why participation has been slower than anticipated.
- Housing Affordability and Availability: A recent report released explains the nationwide housing affordability crisis people with disabilities are facing. Learn about some solutions and recommendations that some groups are suggesting to end this crisis.
- Website Accessibility: There has been a rise in the number of lawsuits alleging that companies with inaccessible websites are violating the American's with Disabilities Act (ADA). Read about why it is likely that companies will continue to reach settlements in web accessibility cases, rather than take cases to trial.
- ADA Guidance: The Justice Department has rescinded many guidance documents which clarify implications of the Americans with Disabilities Act. Learn what impact may have on people with disabilities.
- Changes to ABLE Accounts: A major tax law that took effect in January is bringing changes to savings accounts for people with disabilities and causing concern about funding for programs. Find out why advocates are concerned.
- Family Caregiver Input: When developing health and long-term care policy, the government hears a lot from providers, drug and medical device makers, and various lobbyists and advocates, but they rarely hear from family caregivers. Read about how a new law could change that.
- Be Inspired: Read about how having a disability doesn't stop one Wisconsin farmer from living his dream.
Here's a sample of upcoming events listed on the Self-Determination Network:
- Webinar: Changes To ABLE In 2018: January 25th, 1p.m. to 2:30p.m., Online
- Webinar: International Perspectives On Supporting People With Dementia And Caregivers: January 30th, 1p.m. to 2p.m. Online
- Transition Conference 2018: Answering The Call, Pathways To Success!: February 5th-6th, Kalahari Resort and Convention Center, Wisconsin Dells WI
- ADA Live! Rights And Responsibilities With The Americans With Disabilities Act (ADA): February 7th, 12p.m. to 12:30p.m., Online
- Disability Advocacy Day: March 20th, 9:30a.m. to 3:30p.m., State Capitol, Madison WI
- WisconsinSibs: Journey Forward : February 17th, 8:30a.m. to 1p.m., Easterseals, Waukesha, WI
Post your event on the Self-Determination Network and it can be included in future Network News emails to members! Questions? Suggestions? Contact Stacy Ellingen.
The Self-Determination Network is powered by InControl Wisconsin and supported financially by our members and Sponsors. We couldn't keep this Network going with you! Find out how you can help support the Network.
Having a disability doesn't stop this Wisconsin farmer from living his dream. Koch, who grew up on a farm, was raised without pity or sympathy. It may take him longer to do certain things, or he has to do some tasks differently than someone with arms or legs, but Koch says he can do anything others can do. When he's not farming, he's traveling to speak his message, "if I can."
When developing health and long-term care policy, the government hears a lot from providers, drug and medical device makers, and various lobbyists and advocates, but they rarely hear from family caregivers. A new bill entitled the Recognize, Assist, Include, Support, And Engage (RAISE) Family Caregivers Act would change that. Under the bill the Department of Health and Human Services would be required to develop a strategy to recognize and support family caregivers. An advisory council which includes Caregivers had business and government representatives would create this strategy. The strategy would address are expanding person- and family-centered care, training and respite services for family caregivers, policies to help support caregivers at work, enhancing the financial security of caregivers, sharing information about innovative caregiving models, and assessing the effectiveness of federal family caregiving programs.