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When an oven or refrigerator isn’t working, you call an appliance store and have a technician come diagnosis the problem and either fix the issue or tell you that you need a new one. When a vehicle isn’t working, you call a mechanic to find out what the problem is and to determine next steps. In both of these cases, there are multiple places to call for help. If your vehicle needs to be in the shop for an extended period of time, you can get a loaner vehicle or figure out other means of transportation relatively easily. Sure, it’s an inconvenience, but there are ways to get to and from places. Same thing with appliances—when a refrigerator malfunctions, there are coolers and ice people can use to keep the food cold; when an oven stops working, there are microwaves or things like air fryers to cook food. Again, inconveniences, but there are relatively doable solutions to get by without the for the time period it takes to either get it fixed or get a new one. What happens, though, when customized equipment people rely on to live their lives malfunctions? Most of the general population will never even have to think about that, but, for people who have to rely on durable medical equipment and assistive technology to literally be able to function, having a mobility device or other pieces of equipment stop working, can often be debilitating.

“My computer is like my baby,” I recently said while texting my mom one night. In early January, my computer started occasionally glitching. For awhile, I chalked it up to my Internet provider having issues. I had a virtual meeting where the issue became more prevalent, so I knew I needed to look into the problem further. I went online and ran all of the general things that the Internet provider’s website said to do. That didn’t fix the problem, so I had one of my workers, so I had one of my workers call the provider. She spent an hour and a half on the phone trying different things. Unfortunately, nothing they had her do solved the issue. A few days later, my parents came to look at it. Nobody could figure it out. Keep in mind that I spend all day on the computer, so during this period I was trying my best to make it work even though it was glitching more and more. We eventually had the Internet company come to my apartment. They replaced all of their equipment thinking that was the problem. Unfortunately, that wasn’t the case. That’s when I really started to panic because I knew it meant this was a much bigger issue. My parents ended up unplugging everything from the computer tower (including my eye gaze system and my adaptive keyboard) and taking it to a computer place to have diagnostic tests done on it. This made me extremely nervous because everyone knows that you don’t touch assistive technology equipment that’s working—it had to be done, though.  Low and behold, testing found that the processor was going bad which meant that I need a whole new computer.

When you rely on assistive technology to use the computer, buying a new computer isn’t as simple as it sounds. The last several computers I’ve had were bought and setup through an assistive technology evaluation which meant a specialist helped me figured out which computer worked with my specialized equipment and set it all up for me. However, this time I knew that wasn’t going to be possible for a couple reasons. The first being timing. I knew my computer wouldn’t last the several months to just to get funding approved for an eval regardless of which avenue I went through. Second, I also know that the assistive technology specialist who had done my last computers is no longer at my Independent Living Center.  We called to see if they found a replacement for him, but they haven’t. So, my parents and I were on our own to figure it out. I bought a membership to the Best Buy Total program which included diagnostic testing, consulting, and transferring data to a new computer. My amazing parents made several trips up to Oshkosh to work on this. I emailed the rep from the eye gaze company to get the requirements for the eye gaze system that I have. I bought a computer online, my parents unplugged everything again, took everything ( including my keyboard and eye gaze system) to Best Buy again, and they transferred everything. I was without a computer for about 48 hours which was super weird for me—I didn’t know what to do with myself. My parents came up again, picked everything up again, brought it back to my apartment, and set it all up. Miraculously, everything worked! Major kudos to Best Buy and my parents. I can’t describe how nerve-wracking it was for me to have people unfamiliar with my assistive technology equipment setting up my computer. I depend on it for so much.

Mobility devices, such as electric scooters, power wheelchairs, and power lifts also have the ability to malfunction. I’ve used a power wheelchair for 38 years, and I’ve had countless problems with chairs. From motors going out, to joysticks malfunctioning, to wheels falling off… The list is endless. Just like a vehicle, when something is wrong with my chair, it has to go into the shop. When I was younger, it wasn’t as big of a deal because I could just use my stroller or manual wheelchair because I didn’t need to be as independent. As I got older, we kept old power wheelchairs for backup. When I was a teenager and in my early 20s, my body adjusted to the old chair pretty well so it wasn’t a big deal; however, as I age, my body often has a really hard time adjusting to an old chair. Each chair has a slightly different customized seating system and it takes a while for my body to conform to it. The seating isn’t the only thing that takes some adjustment. Often, chairs are slightly higher or lower than one another. When I get a new wheelchair, other equipment such as my computer desk and kidney bean table, have to be adjusted so I’m able to access them. When I have to use an old wheelchair, I’m not able to access those things without adjustments being made. Needless to say, when something goes wrong with my wheelchair, it’s an ordeal.

I just discussed some of my experiences with my devices. Others have different experiences with the equipment that they have. It’s often not as simple as “getting a new computer” or “using a loaner wheelchair.” Many times, there are several factors that needs to be considered.  I hesitate saying that you get used to having to jump through multiple hoops to get what you need, but the fact is you do. You think about things that nobody else will because you’re the person using the equipment. There have been multiple times where I brought up a critical issue about a piece of equipment that nobody else thought about.

You learn what works best for you and you learn that you have to speak up when something isn’t going to work for you. As much as I wish I could just buy a new computer or get a loaner wheelchair, that’s just not in my cards. I’m beyond blessed to have an incredible support system who is willing to help me figure these things out!

***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

Meet Tanya. This music-loving auntie is just starting to get involved in disability advocacy. She’s looking forward to moving out and becoming more independent. She loves to find resources for people to solve problems. We’re so fortunate to have her as a member of the Network!

What's your story?  Tell us a little bit about yourself.

Tanya is a 38-year-old woman who works at Bath and Body Works. She has seven nephews who she adores. They range in age from 4 to 22. While the older ones work or are in school, the younger ones like to do from building things with blocks to making obstacle courses. “I’m also considered everyone’s auntie,” she tells us.

Tanya shares that hydrocephalus (water on the brain) is her main disability. She also has mild cerebral palsy and spina bifida.

How are you involved with self-determination? Why did you join the SD Network?

Tanya shares that she is just beginning to get involved in disability advocacy. She serves on two committees for Molina MyChoice. She enjoys being able to make suggestions on how to help others. She also is currently taking the Partners in Policymaking course. She loves learning about the different legislation and the representative branches. She also likes meeting new people.

Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?

Tanya is excited that she’s looking for a place to live. She’s looking forward to becoming more independent and being able to ride the bus places. She's also excited to be able to walk or ride her bike places if close enough. 

What tip or resource would you like to share with people who want to be more self-determined?

Tanya shares that she loves to help people find answers to questions they have. Using her own experiences, she is good at finding a variety of different resources for people.

What are some of your hobbies?

Tanya doesn’t just have one hobby. She is very open to trying almost anything. One of her favorite things to do it listen to music. The genre of music usually depends on her mood. She listens to anything from country to hip hop. She can switch genres in an instant! “It helps get creative juices flowing,” she says.

***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.

AARP and the National Alliance for Caregiving report that one in four American adults are caregivers.  Katie Moureau, in Cottage Grove, is a mother to five boys and the caregiver to those who require additional care. Between administering medications, special diets, and several appointments throughout the week, Moureau said she can’t work because her boys need around-the-clock care. The Survival Coalition of Wisconsin Disability Organizations surveyed 525 caregivers. It found that 60% of unpaid caregivers provide care equal to or exceeding a part-time job.

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The Bipartisan Policy Center interviewed older adults through The People Say initiative to identify health care challenges. Key recommendations include: establishing Medicare respite benefits and caregiver tax credits to support family caregivers; addressing direct care workforce shortages through apprenticeships and adequate Medicaid payment rates; expanding telehealth and behavioral health access; streamlining Medicare Savings Program enrollment; and reducing system complexity through State Health Insurance Assistance Programs and integrated care models like PACE.

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Theo Braddy, executive director of the National Council on Independent Living (NCIL), discusses threats to disability rights. NCIL is the longest-running disability-led association in the nation with 660 centers across the country that empower people with disabilities to thrive in their communities. Braddy: "Discrimination against and the oppression of people with disabilities is largely invisible in our society until it happens to us."

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Litchman received approval for IRIS, Wisconsin's self-direction program, but struggled to find personal care attendants at $17/hour maximum wages. With immigrants comprising 32% of home care workers, Trump's immigration raids and deportations worsen existing workforce shortages (75% turnover, 1-in-4 vacancies). Combined with Medicaid cuts threatening optional HCBS programs, these policies push disabled people toward institutionalization.

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The civil rights movement led by Dr. Martin Luther King, Jr. from 1955 to 1968 reshaped the nation's understanding of discrimination and equality, making it possible to reconceptualize disability as a civil rights issue and paving the way for Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990. Section 504 adopted the same nondiscrimination language as Title VI of the Civil Rights Act, extending protections to disabled people, while the ADA used the same structure to prohibit discrimination in employment, public accommodations, transportation, education, and government services. The disability justice movement builds on King's insight that "injustice anywhere is a threat to justice everywhere," recognizing that ableism is interconnected with racism, sexism, classism, and other systems of oppression, requiring collective action to dismantle all barriers to achieve full equity and liberation.

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The One Big Beautiful Bill Act requires Medicaid expansion states to implement work reporting requirements starting January 2027, with the The Congressional Budget Office estimates over five million people will lose coverage by 2034. The law includes a "medically frail" exemption for those with "serious or complex medical conditions"—broadening previous "serious and complex" language to give states more flexibility.

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